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Global HHT Awareness Day is June 23rd!

Personalized Cause

Hereditary Hemorrhagic Telangiectasia Awareness Day

Today's blog topic is Hereditary Hemorrhagic Telangiectasia (or HHT for short) in honor of Global HHT Awareness Day. As some of you may know from our more recent blogs, it is important to shine a spotlight on rare diseases. Rare diseases may only affect a small population in comparison to other more common diseases. But when you put all the people suffering from a rare disease together they make up a huge community. At Personalized Cause, we believe that there is power in awareness, and that there is strength in numbers. Like Helen Keller said, "Alone we can do so little, together we can do so much."

Personalized Cause is proud to announce that we now carry a red and blue awareness ribbon for HHT. The pin is available for purchase here. We have a red and blue awareness ribbon that can be personalized with a name, date or message, too (click here).

What is HHT?

Hereditary Hemorrhagic Telangiectasia is also referred to as Osler-Weber-Rendu Syndrome (or OWR). HHT is a genetic blood vessel disease that causes bleeding in various parts of the body. HHT, like other rare diseases, can go misdiagnosed or undiagnosed for years or decades. The average length of time for someone with HHT to be properly diagnosed is a whopping 27 years. This is because many of the symptoms of HHT can masquerade as other health problems. HHT is a genetic condition. It is not uncommon for more than one member of the same family to suffer from HHT. HHT can affect many organs, including the skin, nose, spine, lungs, gastrointestinal tract, liver, and brain.

What are the symptoms of HHT?

One of the most common symptoms of HHT is frequent nosebleeds. As many as 90 percent of people with HHT experience recurring nosebleeds. Nosebleeds from HHT are caused by malformed blood vessels in the nose. These malformations are called telangiectasia. Telangiectasia itself can be associated with many different health issues. It is actually a common skin condition with causes ranging from sun exposure to disease.

Telangiectasia with HHT tends to affect the lining of the nose, skin, and the intestines. They look like little red dots that appear on the surface of the tissue or skin. They are usually 1 to 2 millimeters in diameter, but they are not always visible without magnification. These telangiectasia burst and that is what causes the nose to start bleeding. Since nosebleeds are not uncommon in healthy people, this symptom is often overlooked by doctors. Nosebleeds caused by HHT typically start around the age of 12, but can start at any time. Onset of HHT nosebleeds range from babies to seniors. The bleeding severity and frequency also varies from patient to patient. For some they may be an annoying inconvenience. Others may experience so much blood loss that they need blood transfusions.

Another major issue caused by HHT is AVM. AVM stands for arteriovenous malformations. This means that there is a structural abnormality in the connection between an artery and a vein. Arteriovenous malformations are most common in the brain, but they can happen anywhere. HHT causes AVM's in many different parts of the body, including the brain, lungs, liver, and spine. Each location has different symptoms. Let's talk about them in a little more depth.

Cerebral AVM's are not the most common type of AVM due to HHT, but they can be the most dangerous. Around 23 percent of people with hereditary hemorrhagic telangiectasia develop a cerebral AVM. Cerebral AVM's look like a tangle of blood vessels between a vein and an artery. The tangle causes a connection between the vein and artery to grow. This can be dangerous for many reasons. Veins take blood that has already circulated through the brain back to the heart. Arteries take blood full of oxygen from the heart to the brain. Arteries and veins are opposite sides of a two way street. When an AVM is present, it can interfere with this process because the vein and artery connect. This can cause circulation issues, brain damage, neurological symptoms, or even a stroke.

Cerebral AVM's cause extra pressure in the brain. Over time, this pressure can lead to a thinning or weakening of the blood vessels in the area. If the vessels become weak enough they can burst causing a brain hemorrhage. Bleeding in the brain will cause pressure to increase which causing brain damage. It also prevents parts of the brain from getting oxygen which can be devastating.

Brain AVM's can cause various symptoms but sometimes cause no symptoms at all. The most common symptoms of AVM are headaches, seizures, or muscle weakness in only one part of the body. If the AVM is large or located in certain areas it can cause more serious symptoms. These symptoms include the symptoms mentioned above but they would be severe. They may also include difficulty balancing, loss of vision, difficulty understanding or speaking. In some cases, they can even cause paralysis.

Pulmonary AVM's (or PAVM's) are AVM's in the lungs. Pulmonary AVM's are about twice as common as Brain AVM's in people with HHT. Around 40-50 percent of patients have them. PAVM's affect the pulmonary vein and the pulmonary artery. Like brain AVM's, PAVM's cause issues with circulation. Because of the location PAVM's can interfere with the oxygenation of the blood. If there is not enough oxygen in the blood it can cause shortness of breath or difficulty breathing. The lack of oxygen can cause excessive strain during exercise, and may even cause the skin to appear blue.

While it is possible to have a PAVM without having HHT, the vast majority of PAVM's are caused by HHT. HHT type 1 causes an elevated risk for PAVM's. PAVM's can cause brain emboli. A brain embolism is when something in the body becomes dislodged and travels to the brain. It can be a blood clot, clump of bacteria, plaque, or even air bubbles. When they reach the brain they travel through small vessels until they become stuck. This is known as an embolic stroke. Strokes can cause serious disability or death.

People with HHT have to be extra careful when it comes to things that can cause complications from PAVM's. As I mentioned above, air bubbles and bacteria clumps can cause an embolic stroke. For this reason, people with PAVM's have to take preventative measures to reduce risk. Air bubbles can occur during surgical procedures, lung trauma, or even scuba diving. Medical staff are extra careful to make sure people with HHT do not get an air embolism. Scuba diving is not a good idea with a PAVM. Unfortunately, there isn't any work around. Last, antibiotics are given as a precaution before any medical procedure. Anything that could introduce bacteria into the bloodstream is dangerous without antibiotics. That even includes dental work.

Liver AVM's (also called liver vascular malformations) can be very common with HHT. Up to 75 percent of people with HHT have a liver AVM, but only around ten percent of those people experience symptoms. Liver AVM's can cause many symptoms and complications. The majority of symptoms are similar to the symptoms associated with cirrhosis. Severe cases can lead to heart failure due to the continued increased pressure on the heart.

When the heart is affected, diuretics are used to decrease blood volume and swelling. Low sodium diets are a necessity to prevent any extra fluid retention. Sometimes, pressure on the heart can cause heart arrhythmia. There are lots of medicines used to treat this. The last resort for severe cases of liver vascular malformation is a transplant. Liver transplants are only used as a last resort because of the high risk associated. Around ten percent of liver transplant patients do not survive the surgery. The other 90 percent usually see dramatic improvement.

Last but not least, we have spinal AVM's. Spinal AVM's are very rare. They only affect about one percent of people with HHT. Spinal AVM's can cause tissue damage or death over time because of lack of oxygen to surrounding tissue. This can damage the spine and result in chronic symptoms or disability. A damaged spine can affect your ability to walk or move. It can also cause severe pain, numbness and tingling in your legs. On top of tissue damage, a spinal AVM can swell over time and rupture. This is called a spinal cord hemorrhage. There are surgical treatment options to prevent damage or undo damage. Surgery is not an option for all spinal AVM's. Most people with a spinal AVM begin to show symptoms by the time they hit their 20's. The majority of cases are diagnosed in kids under 16 years old.

How is HHT Diagnosed?

HHT is diagnosed using a set of four criteria. If three of the four criteria are met then it is considered a "definite HHT" diagnosis. If there are only two then it is considered a "possible HHT" diagnosis. The criteria for diagnosis are: recurring nose bleeds; telangiectasia in typical HHT areas; diagnosed AVM's; and a blood relative with "definite HHT". More symptoms on the criteria list may surface as one gets older. A "possible HHT" diagnosis can become a "definite HHT" diagnosis over time. There is no cure for HHT. Because there is not yet a treatment to treat HHT itself, doctors rely on treating the symptoms. Some treatments may be done to prevent certain complications from arising.

Living with HHT can be challenging enough on its own. It is made even more difficult by the fact that most people have no idea what it is. Even most physicians don't know enough about it to correctly diagnose it in its early stages. This is where you come in. Anyone can become an advocate for any cause. All it takes is the desire to make an impact and help others. Something as simple as an awareness ribbon can go a long way in spreading awareness.

Awareness Resources

As you may know from looking at our site, we have extensive resources for rare diseases and genetic diseases. In fact, we have compiled specialty lists specifically for each. You can reach them by going to the "find your ribbon" tab in our directory menu. We are currently working on a master list of all causes. The master list will be comprehensive and include brief descriptions, categories and the awareness ribbon color associated with it. It has been a true labor of love. Personalized Cause prides itself on being the most accurate and up to date awareness resource. Since awareness ribbon colors can change over time, we are researching each cause one by one before we add it to our new master list. Our priority is to ensure that you can trust the information you find on our site. Stay tuned for the Master List arrival later this year.

Sources: CureHHT / MayoClinic / CDC / NORD

May 11 is Cornelia de Lange Syndrome Awareness Day

Danica Carson

Cornelia de Lange Syndrome Awareness Day

Happy May, everyone! Today we are going to talk about a rare disease called Cornelia de Lange Syndrome. This post is in honor of Cornelia de Lange Syndrome Awareness Day. Rare diseases are very important to become educated about for a lot of reasons. The biggest reason being that most people have never and will never hear about them. You may be saying to yourself, “if I will never encounter it, why should I educate myself about it?” Rare diseases will not get funding, research, interest or recognition without awareness. Awareness is crucial for developing treatments and potential cures. Education is the key to awareness.

The Importance of Raising Awareness

As you may have noticed, diseases and cancers with the most public awareness receive the most publicity, funding and research. Take breast cancer for example. The pink awareness ribbon is one of the most recognized awareness ribbons out there. Breast cancer fundraisers and events have led to research breakthroughs over the years. We can now test for hereditary breast cancer genes. This allows us to prevent generations of women from developing the cancer.

Another example is the Ice Bucket Challenge for ALS. The Ice Bucket Challenge was a viral meme that made the rounds through social media in 2014. It was an awareness campaign where people participated by making their own videos. Participants would begin the video by explaining that it was for ALS. They would then nominate three people to do the challenge. Finally, they would get a bucket of ice water dumped over their head. In 2016, it was reported that the Ice Bucket Challenge helped scientists identify a gene associated with ALS. All in all, the Ice Bucket Challenge raised $115 million dollars for ALS. The Ice Bucket challenge received criticism for being a trendy way to appear socially conscious. Digital activism with minimal work or commitment is called slacktivism. Critics focused on the dangers of slacktivism instead of the fundraising results. The skeptics were proven wrong only two years later. This demonstrates how powerful awareness can be for a disease, and why raising awareness for all rare diseases is so crucial to progress.

What is Cornelia de Lange Syndrome?

Cornelia de Lange Syndrome is a rare genetic disorder. CdLS is most often diagnosed after birth. It can sometimes be diagnosed through an ultrasound during pregnancy. CdLS carries many distinctive physical features, associated developmental delays, and intellectual disabilities. CdLS varies from patient to patient. Some people with CdLS may have most of the characteristics of the disease, while others may only have a few. Severity of each symptom is also variable.

What are the Symptoms of Cornelia de Lange Syndrome?

First, let’s talk about the physical symptoms. As I mentioned above, most CdLS patients are diagnosed as babies. Babies with CdLS often exhibit growth and developmental delays. This can affect their height and weight, and can be severe enough to be considered failure to thrive. Children with the syndrome are usually smaller than other children their age. They also have certain smaller features. The most noticeable physical symptoms are those that appear on the head and face or limbs.

Cornelia de Lange Syndrome may cause many craniofacial abnormalities. There is also "a look" associated with kids with CdLS. These characteristics include a small or short head and upturned nose. They may also have rounded eyebrows that usually grow together, a short, wide neck, and a very low hairline. There are less distinctive physical attributes associated with CdLS, too. An underdeveloped jaw, excessive hair growth, and cleft palate may all occur.

There are other physical abnormalities that occur with CdLS. Many symptoms affect the arms, legs, fingers, and toes. The most common of these abnormalities are small hands and feet in proportion to the rest of the body. Limbs may not develop fully on one or both sides. Severe, but rare, instances of this can mean that hands or forearms do not grow at all. Fingers that taper towards the end, abnormally positioned thumbs, missing fingers and curved pinky fingers are also symptoms of Cornelia de Lange Syndrome.

CdLS can also cause problems in the stomach and intestines. For example, it can cause abnormal intestinal twisting. This can be severe enough to cause a full obstruction. Intestinal obstruction can be fatal if not treated. Sometimes the esophagus and lining of the esophagus are affected. This can cause inflammation and a narrowing towards the stomach. This causes difficulty eating or keeping food down. A similar narrowing can also develop where the stomach connects to the small intestines. This can be serious when eating and digestion are affected. Malnutrition can occur when there are problems with the gastrointestinal tract. This can be even more dangerous because kids with CdLS tend to be small and weigh less.

Kids with CdLS may also suffer from cardiovascular, respiratory, and autonomic nervous system issues. There are some heart abnormalities associated with the syndrome. Chronic respiratory infections are common, as well. It is important for kids with CdLS to avoid the flu because of their higher risk for complications. The autonomic nervous system controls the automatic functions of the body. This includes everything from breathing to sleeping. With autonomic nervous system dysfunction, the brain may not control automatic functions well. In CdLS, this may mean seizures or nystagmus (uncontrollable movements of the eye).

There are many other physical signs and symptoms of Cornelia de Lange Syndrome. I cannot cover everything. If you are interested in learning more, I suggest It is the mecca of rare disease information.

Intellectual Signs and Symptoms of Cornelia de Lange Syndrome.

CdLS may also cause issues with intellectual development and coordination. This can include psychomotor retardation, as well as intellectual disability. Psychomotor retardation means that the child may have difficulty developing mental-muscular coordination. Simply put, this means that they may struggle to develop motor skills. As far as intellectual disability, it can range from mild to severe, and may impact the child’s behavior. Behavioral issues may include screaming, biting, and self-harm behaviors like hitting themselves.

What Causes Cornelia de Lange Syndrome?

While CdLS can be genetic, the majority of cases are due to a gene mutation that is not inherited. There are five different genes that are associated with Cornelia de Lange Syndrome. In 60% of the cases, the cause can be traced to the NIPBL gene. The remaining 40% may be traced to different genes. CdLS does not seem to affect one sex more than the other. Both girls and boys are affected.

There are two ways that CdLS can get inherited. It can be an autosomal dominant condition, which means that you can develop the condition even if only one parent has the gene. The other way is as an x-linked condition, which means that it gets passed down through the X chromosome. Cornelia de Lange Syndrome is a rare disease, and affects about 1 in every 10,000 babies born. Because it can be inherited, there are families that may have more than one child born with CdLS.

What are the Treatment Options for Cornelia de Lange Syndrome?

Like many other diseases, the treatment focuses on the specific symptoms. This is called supportive treatment. Since CdLS affects so many different systems, children may have teams of specialists that all work together to treat them. The type of specialists that make up the team will depend on the symptoms. For some symptoms, there may be more permanent solutions. Issues such as a cleft lip or cleft palate can be surgically corrected. Some heart problems that develop from CdLS can be corrected with surgery. Gastrointestinal issues can also be helped with surgery.

There are medications available to treat certain symptoms. It is important to note that treating the symptoms and treating the disease are different. There are no treatments designed to specifically treat the syndrome or all the symptoms. Medications can treat things such as seizures and infections. They can also treat urinary issues, gastrointestinal issues and more.

A Little Information About Rare Diseases.

Cornelia de Lange Syndrome is one of almost 7,000 rare diseases. The definition of a rare disease is a condition that affects less than 200,000 people. That number applies to the United States. Rare diseases may be genetic or random. Rare diseases have no difinitive characteristic other than the number of people affected. Some may be chronic illnesses, some may be disabilities, some may be gene mutations. They may be different than all three of these.

The biggest obstacle people with a rare disease face are finding a doctor that can diagnose them. The second biggest obstacle is finding treatment options that have a meaningful impact. As you can imagine, diseases that aren’t common have less appeal to drug companies. Developing a medication that only treats a small percentage of the population is not as profitable as one that treats millions of people. The struggle to figure out what is wrong with you and the struggle to find a medication that helps is endless. Rare disease patients may suffer for years or decades before finding their answer.

Rare Diseases and Orphan Drugs.

As I mentioned above, there are very few options for medications to treat rare diseases. There are certain pharmaceutical companies dedicated to developing medicines for rare diseases. There are also some divisions of major drug companies that develop these medicines. These medications are called Orphan drugs. The Orphan Drug Act provides funding and incentives to companies who develop them. These drugs take longer to develop because they have smaller development teams and less funding. Even so, Orphan drugs have great potential for future breakthroughs in treatment. Orphan drugs offer a lot of hope.

"When we have hope, we discover powers within ourselves we may have never known- the power to make sacrifices, to endure, to heal, and to love. Once we choose hope, everything is possible." -Christopher Reeve


National Infertility Awareness Week

Personalized Cause

National Infertility Awareness Week Starts Today!

Welcome back, everyone!

Today’s post is dedicated to National Infertility Awareness Week. Infertility is a tough subject. It is surrounded by a swirling cloud of stigma, shame, guilt, depression, pain, loss, and fear. It used to be considered taboo to talk about fertility struggles openly.

Thankfully, people are much more open about their struggles now. The more open people are, the more we realize how common these issues are. There is a vast network of infertility support groups on social media. These social media support communities offer those struggling a sense of support. They also lessen the isolation felt by those who are struggling. Social media can be a powerful way to connect and support one another. These communities can be found using hashtags specific to the topic. #ttc and #infertility are a good place to start.

What is Infertility?

In simplest terms, infertility is the inability to get pregnant. The definition of infertility is the inability to get pregnant despite having regular unprotected sex for between six months and a year. The length of time depends on your age. Under age 35, it is considered infertility if you have tried to get pregnant for over a year but have not conceived. After age 35, the length of time is only six months. Fertility decreases over time after age 30. Your chances of becoming pregnant after age 35 are much lower. The length of time is decreased to six months so that any issues can be addressed quickly.

Infertility does not mean that you will never be able to have a child. Infertility is not the same as sterility. If a health problem is causing the issue it can be addressed. There are many factors that contribute to your ability to get pregnant. If one of those factors isn’t quite right, it can derail your ability to conceive. If both partners have fertility issues it can compound difficulty of getting pregnant. This occurs in around 20% of couples experiencing infertility. Medical intervention is always an option for couples that are unable to have a baby on their own.

What Causes Infertility?

Infertility can be caused by a lot of different health issues. Sometimes, there is no identifiable cause of infertility. Around 15% of couples that went through all the testing were unable to find any source for their struggle. Both men and women can have issues with fertility. It tends to affect both men and women pretty equally, but the causes are very different.

What Causes Infertility in Men?

The biggest cause of infertility in men is a problem with sperm. There are a lot of things that can affect sperm count or sperm quality. A low sperm count can make conception very difficult, if not impossible. A normal sperm count ranges anywhere from 15 million to 200 million sperm per millimeter. A low sperm count is considered anything under 15 million. A low sperm count doesn’t mean you can’t get pregnant, it means it may take more tries. It’s a numbers game. The more attempts, the higher the odds. Another issue men can experience is low sperm motility. Low sperm motility just means that they don’t move quite as well. If the sperm aren’t strong swimmers, it makes it more difficult for them to reach the egg.

Sometimes external factors can affect a man’s sperm count or quality. Testicular injury can affect the production of sperm. Sperm count will typically return to normal as long as no permanent or long-term damage is done. Something as common as heat can also affect sperm. A recent study by Fertility and Sterility showed that the heat produced by electronics can affect sperm motility. It even found that it causes damage to the DNA in the sperm. If you put your laptop on your lap, be sure to use a special fan that goes under it.

Another common external factor that can affect sperm is medication, drugs, and alcohol. There are lots of different kinds of medications that are known to cause infertility. This is because they affect the production of sperm. Medications used to treat anxiety and depression, supplemental testosterone, anabolic steroids, hair loss treatments like Propecia, erectile dysfunction medicine, chemotherapy, and more can affect sperm. Heavy drinking, smoking cigarettes or marijuana, and other illegal drugs can also impact fertility.

What Causes Infertility in Women?

Infertility in women gets a little trickier. There are a lot of things that can affect a woman’s ability to get pregnant. The biggest issue for women is not ovulating . If ovulation doesn’t occur, the egg doesn’t release from the ovary. No egg means no baby. One of the most common causes is a condition called Polycystic Ovarian Syndrome. It can also be a result of long-term birth control pills use. Ovulation will usually return to normal after a few months off of the birth control.

Polycystic Ovarian Syndrome, or PCOS, falls under the category of problems with ovulation. PCOS is a disease that causes hormone imbalance. The hormone imbalance causes issues with ovulation. PCOS is one of the most common causes of infertility in women. PCOS is more common in obese women because of an associated insulin resistance. Other medical issues that affect ovulation are hypothalamic dysfunction, premature ovarian failure, and excess prolactin production. Most of these issues can be treated with hormones.

Another common cause of infertility is Endometriosis. Endometriosis is a condition that causes endometrial tissue to travel and grow outside of the uterus. Endometriosis can also affect the uterine lining. This can prevent a fertilized egg from implanting in the uterus. Endometriosis can cause scarring wherever it occurs. Scarring within the uterus or fallopian tubes can make it difficult for the egg to implant. There is an increase in fertility immediately following surgery. The surgical treatment to remove endometriosis can cause scarring later on. The most common symptoms of endometriosis is very heavy and very painful periods.

Uterine and cervical issues are also potential causes of infertility. The most common uterine problems are fibroids and myomas. Fibroids and myomas are benign polyps or tumors that develop. These non-cancerous growths can prevent an egg from implanting. Sometimes, they can grow near the fallopian tube and block the opening. Other uterine and cervical issues can occur at birth or during development. The uterus can be shaped abnormally. There is a cervical malformation called cervical stenosis. Cervical stenosis means that the cervix is narrower than it should be. This can make it difficult for the sperm to reach the uterus.

Unexplained Infertility.

Generally speaking, infertility is broken up into thirds. One third of infertility cases are due to female infertility. One third is due to male infertility. The remaining third is due to either a combination or unexplained infertility. There isn’t always a clear and direct cause of infertility. There may be a few minor issues that all intersect when trying to conceive. Some factors that can contribute to infertility are age, weight, smoking, alcohol, caffeine, past sexually transmitted infections, and stress. Most of these factors can be minimized by simple lifestyle changes.

Are There Tests to Diagnose the Cause of Infertility?

There are many diagnostic tests to figure out what is causing your infertility. For women, the first step is determining if infertility is being caused by ovulation issues. This is done with a simple blood test. The blood test measures the level of progesterone in the blood. The body produces more progesterone after ovulating. The doctor may also test for other blood levels, such as prolactin. There are also at-home ovulation prediction kits. These kits test for the increase in luteinizing hormone that is produced before ovulation.

Other tests may be done depending on what the blood tests show. If the tests show a problem with ovulation, the doctor may order other hormone tests in addition to ovarian reserve testing. Ovarian reserve testing is done to determine how many eggs there are and the quality of those eggs. Women over 35 are more likely to have these problems. If the tests show that ovulation is normal, other tests can be done to find out what else may be preventing pregnancy. These tests include hysterosalpingography, ultrasound, hysteroscopy and laparoscopy. These will look for abnormalities in the uterus, fallopian tubes, and ovaries.

Can You Treat Infertility?

There are many things you can do to treat infertility. There are a handful of medicines that can stimulate ovulation for women. There are also other medications that used to treat specific issues like PCOS or high prolactin levels. In short, once you determine the source of the struggle, there are options to treat or fix the problem. If the issue stems from a structural problem, growth, blockage, scar tissue or endometriosis, there are surgical options to improve the issue.

If the issue can’t be corrected or improved with any of these therapies there are other methods. These methods are called reproductive assistance. Reproductive assistance is for people who have not been able to improve the cause of their infertility. It is also for couples who have been unable to determine the cause of infertility. The most common reproductive assistance methods are Intrauterine insemination and IVF.

Intrauterine insemination is a method that works by placing sperm inside the uterus around ovulation time. IVF is considered the most effective assisted reproductive method. IVF is a little more involved than intrauterine insemination. It requires egg retrieval and daily hormone injections. The eggs are combined with the sperm in a lab. Fertilized eggs are then implanted into uterus. If all else fails, there are always options such as adoption, sperm donation, egg donation, and surrogacy. If you want to become a parent, there is a way to make that happen.

It is important to realize that infertility is a fairly common problem. About one in eight couples will struggle with infertility. One of the biggest issues with infertility is the stigma surrounding it. Because infertility is personal in nature, some people try to hide their struggle and put on a brave face. Infertility is not a failure or a flaw. It is simply an obstacle, and it can be overcome with the help of a doctor. Remember to be kind to yourself, keep hoping for the best, and stay optimistic. One way or another, everything will be okay.

Thank you for reading! Check back in soon for a new post.


Sources: WebMD, Mayo Clinic

World Autism Awareness Day

Personalized Cause

“It takes a village to raise a child. It takes a child with autism to raise the consciousness of that village.” – Elaine Hall

World Autism Day – Light It Up Blue

Happy April, everyone! Spring has finally sprung and I couldn’t be happier about it. A new month means new awareness observances and awareness holidays. April has a lot of important awareness observances. Choosing which causes to discuss can be difficult when so many causes are worthy topics. To be comprehensive and educational, I have chosen to focus on one subject per post. As the years go on, every month will feature different causes than the year before. Over time each cause will get the attention it deserves.

Today I want to talk about Autism, in honor of Autism Awareness Month, World Autism Awareness Day & Light It Up Blue. Both holidays take place tomorrow (April 2nd). Before we get started, I want to give you guys a little background on World Autism Awareness Day and Light It Up Blue.

The History of World Autism Awareness Day.

In 2007, the United Nations voted to make April 2nd a universal day to promote awareness for Autism. In 2008, the first annual World Autism Awareness Day was celebrated. The United Nations dedicates itself to ensuring that the human rights of all people are honored. It is important for the UN to recognize Autism because it can affect learning, development, and communication. If a person with Autism has difficulty with any or all of those functions, it will impact the freedom and equality they receive.

Various therapies are used to treat Autism. The outcome is influenced by how soon the treatment is started. Access to Autism therapies can be determined by location and socio-economic status. This creates inequality for people with Autism living in places without access, or those without means. The United Nations dedicates itself to combatting inequality through policy and resources. Their goal is to create a world where someone with Autism has equal rights regardless of their limitations.

What does Light It Up Blue mean?

World Autism Awareness Day and Light It Up Blue are designed to raise awareness for ASD (autism spectrum disorders). This includes Asperger Syndrome, and Pervasive Developmental Disorder – Not Otherwise Specified (PDD – NOS). Light It Up Blue is an annual campaign held on World Autism Awareness Day. It uses the color blue to spread the message of awareness and acceptance worldwide. Every April 2nd, iconic landmarks around the world are lit up with blue lights to signify support for the Autism community.

Light It Up Blue is sponsored by an organization called Autism Speaks. The chairman of General Electric founded Autism Speaks in 2005. He and his wife founded the organization after their grandson was diagnosed with Autism. That connection may have been the inspiration behind the campaign. General Electric’s most iconic product is the light bulb. LIUB uses blue light bulbs to turn structures and buildings blue. Coincidence? I doubt it.

ASD. What Does Being On The Spectrum Mean?

First, let's talk about what being "on the spectrum" means. Autism, or Autism Spectrum Disorder (ASD), has a wide range of symptoms. Someone with Autism may experience any, all, or a combination of these symptoms to varying degrees. Combinations of symptoms and the severity of those symptoms can vary drastically from patient to patient. Autism is referred to as a spectrum because of the wide range of symptoms. No two patients are exactly the same.

Personalized Autism Awareness Ribbon

Personalized Autism Awareness Ribbon

The Basics of Autism.

Autism is a neurobehavioral condition. It can affect development, communication skills, sensory processing, social skills, and more. Each person on the spectrum may exhibit different combinations of symptoms with varying degrees of severity. The severity of the symptoms affects what kind of limitations they experience.

Autism typically becomes apparent as children fail to reach developmental milestones. These occur during the first three years of their life. Some children can begin to shows signs as infants, but most symptoms become clear between 18 to 36 months old. Parents commonly describe their child as developing normally until around that time. Then they began to exhibit symptoms. Sometimes, symptoms may not arise until circumstances force them to the surface. This means that symptoms may go unnoticed until later than usual when a particular situation makes them appear.

People with Autism tend to have a difficult time processing different kinds of sensory stimulation. This may manifest as sensitivity to light, sound, touch, or smell. It can range from feeling overwhelmed or uncomfortable to complete intolerance.

Autistic people may also experience some degree of cognitive impairment. This is in comparison to neuro-typical cognitive function. People with Autism tend to have delays or deficits in certain areas of development but not all. Cognitive impairment usually affects all areas, but people with Autism tend to show issues in only some areas. In contrast to their impairment, they may develop exceptional skills in other areas. This can show up as musical talent, memorization skills, an aptitude for math, and more.

Autism can also affect behavior. One behavior associated with Autism is repetitive movement, like rocking or pacing. In some cases, these repetitive movements can be self-injurious. They may develop attachments to certain objects. Narrow interests and obsessions with certain subjects are common. They may also be fearful or resistant to change. Change in routine can be especially difficult. Many parents of ASD children bond over their shared experiences with trying to get their child to try new foods or activities.

What Causes Autism?

While Autism is on the rise, it is not clear why. It may be from an increase in awareness or it may be that the incidence of the disorder is actually increasing. Autism is not caused by race, ethnicity, socio-economic status, lifestyle, geographic location, sex, or any other classification. Boys are more likely to develop Autism than girls. Some speculate that this is because girls with Autism are not diagnosed even though they may have it. It is believed that there are more girls with Autism than the statistics suggest. Socio-economic status does not cause Autism, but it can affect treatment and prognosis. The earlier someone with Autism begins treatment, the better the long-term outcome. A family’s inability to pay for such treatments may have a lasting effect on an Autistic person. Geographic location can be a factor if the family lives in remote or rural areas. Treatment facilities may be scarce or non-existent in less populated areas.

Autism appears to have a genetic component. It tends to run in families, although no specific genes have been identified yet. Researchers believe it may have something to do with irregular segments of genetic code or specific gene mutations. Whatever the genetic association is, it's clear that it can run in families. Another genetic factor is the age of the parents. The older the parents are, the higher the risk for the child.

Personalized Puzzle Pieces Awareness Ribbon for Autism

Personalized Puzzle Pieces Awareness Ribbon for Autism

What Are the Treatment Options Available for ASD?

Treatment options vary depending on the symptoms. There is a spectrum of treatment options to match the spectrum of symptoms. Treatments include behavioral and communications therapies, occupational therapy, sensory integration therapy. There are also medications to treat associated symptoms. Keep in mind there is no cure for Autism, and there are no medications developed specifically to treat it. Let’s dig into each of these therapy options a little.

There are quite a few behaviors and communication treatments when it comes to ASD. Each treatment uses different techniques to engage with the child and encourage learning. The type of therapy depends on which works best for that child. One of the most common is called Applied Behavioral Analysis (ABA). ABA works to improve good behaviors and reduce bad ones using various techniques. This includes positive reinforcement, motivation, and communication skill development.

Another type of behavior and communication therapy is referred to as “Floor-time”. Floor-time is exactly what it sounds like. It involves getting on the floor with your child to interact with them doing the things they like. The intention is to build and encourage emotional skills, which stimulate intellectual growth.

There are two types of treatments that involve visual cues. The first is called TEACCH, which stands for Treatment and Education of Autistic and Related Communication-handicapped Children. The second is called PECS, which stands for Picture Exchange Communication System. The difference between the two is that TEACCH uses picture cards to teach, while PECS uses symbols.

Occupational therapy teaches children with ASD life skills. Occupational therapy helps them develop, maintain, or restore independence through skill development. These skills allow them to overcome obstacles that keep them from performing daily activities.

Sensory Integration Therapy helps children whose symptoms include sensory processing issues. Sensory Integration Therapy works by taking stimuli that a child is sensitive to and slowly exposing them to it in a controlled setting. Over time the child will acclimate to these stimuli so that they can function better.

Last, but not least, there are some medications that are used to help treat different kinds of issues that people with Autism can experience. There is a link between Autism and seizure disorders. One of the medications used to treat people with Autism and seizures is seizure medication. Other issues associated with Autism are trouble concentrating, depression and anxiety, and insomnia. These symptoms can be treated using medications. Risperdal has been FDA approved to treat irritability in people with Autism.

How Can I Help?

The biggest thing you can do to help those with Autism is to be supportive and understanding. Sometimes when kids with Autism get overwhelmed they have what is called a "meltdown". It's important to understand that children having a meltdown are suffering, not misbehaving. It is equally important to recognize that this is not related to a parenting issue. Parents often feel judged when their kids experience a meltdown in public. The root issue is a lack of understanding and awareness, not a shortcoming on the part of the parents or the child. People are quick to say, "if that were my kid…" followed by how they would handle the situation. It is unfair to the people involved and it perpetuates the judgment they experience.

Another way you can help is by educating yourself and others about Autism. Become an advocate for people affected by Autism with a universal symbol of support. Awareness ribbons are a simple yet powerful way to raise awareness. Awareness nurtures support, and support leads to more fundraising and more research. The awareness ribbon used to raise awareness for Autism is the puzzle pieces ribbon.

You can also help raise money by holding your own fundraiser. Donate the proceeds to the Autism organization of your choice. April 2nd is the perfect day to host a blue-themed bake sale to celebrate Light It Up Blue. If bake sales aren’t your thing, you can host a craft booth with old puzzle pieces. Paint the pieces white, grab some colorful sharpies and charge per puzzle piece. Crafts not really your thing either? No problem. Here's an easy one I came up with; Find a wall, make a blue backdrop for it, grab some blue accessories and boom! You've got yourself a Light It Up Blue themed photo-booth. Charge per photo, and don't forget to share it on social media using the hashtag #LIUB. If you prefer something more traditional, buy some puzzle pieces fabric awareness ribbons in bulk and resell them at a higher cost. Take the profits and donate them to the organization of your choice.

That’s all for today! Thanks so much for reading! Be sure to check back soon for my next post. And, HAPPY AUTISM AWARENESS MONTH!

Sources: Autism Speaks,, NIMH, WebMD

Rare Diseases Are More Common Than You Thought - Celebrate Rare Disease Day!

Personalized Cause

Rare Diseases Are More Common Than You Thought - Celebrate Rare Disease Day!

Hey guys! Me again. I know it’s been awhile, but I’m back with a new blog for all our wonderful readers. Today I’m going to talk about a subject that is near and dear to heart because I am a member of this community. So without keeping you guys all biting your nails in suspense, today we’re going to talk about RARE DISEASES in honor of RARE DISEASE DAY!

There is a saying in the medical community, and a rule by which most doctors live, and it goes like this: “If you hear hoof beats, think horses not zebras.” This is what is known as Occam’s Razor. Occam’s Razor is a theory that basically states that the simplest answer is usually the correct one. The majority of the time, this is not only a logical rule to live by but also a practical and responsible one. If my box of Girl Scout cookies suddenly disappears, it was probably my husband, not a thief that broke in and stole only a box of Thin Mints. This way of thinking helps doctors make healthcare decisions. Rather than exposing a patient to painful and invasive diagnostic tests that are likely unnecessary, they look at the most probable source of the issue and limit their testing to that, saving the patient both time and money. Makes sense, right? The problem is that every now and then, those hoof beats are actually made by a zebra instead of a horse. For those patients, Occam’s Razor is a hindrance to their diagnosis and treatment.

This age-old saying was the source of inspiration for the rare disease awareness ribbon. Rare disease patients have affectionately adopted and appropriated zebra stripes to represent their cause.

Rare Diseases

Talking about rare diseases is so important for so many reasons. For starters, rare diseases get the least attention… from everyone, including the medical community and drug manufacturers. It’s not that people actively ignore rare diseases, it’s just that most people have either never heard of the conditions, or don’t understand them. Even most doctors do not usually see cases of even the more common rare diseases. A physician may go their entire career having never seen or heard of some of the diseases classified as rare diseases. This is especially problematic when trying to gain visibility in the rare disease community. It can be very difficult to raise awareness and raise money to support a cause that nobody has ever heard of. As you can imagine, it is hard to find support for a disease that has no celebrity spokesperson and a very small market for drug manufacturers. Not to mention that most people have never and will never be personally affected by it.

This sadly leaves many patients with rare diseases in a difficult position. Not only is it difficult to discover the correct diagnosis, but even with the diagnosis treatment options can be limited because of the lack of research and development invested into creating drugs to treat the disease. After you have overcome all of those issues, patients can still suffer because of the lack of experience their doctor has in treating that condition. There are so many obstacles like the ones described that rare disease patients face in their personal health journey.

So what is a rare disease, and what’s the deal with rare disease day? I’m glad you asked. Let me break it down for you.

First off, let’s talk about what rare diseases are. Obviously, they are diseases that are rare. I know you didn’t need me to figure that out. But what are the qualifications for a rare disease?

In the United States, a rare disease is considered any disease that affects less than 200,000 people. That sounds like a lot, but when you consider the fact that there are over 325 million people in the U.S., it really isn’t very many at all. There are somewhere around 7,000 rare diseases. With over 7,000 different kinds of rare diseases, it’s no wonder that it’s so hard for people to get their diagnosis. Can you imagine having to memorize 7,000 different rare diseases in med school that you were likely to never encounter? That would be nuts. Nobody would ever get through med school.

Doctors get a general overview of everything and then focus their time on the diseases they are most likely to be presented with. This is why it has fallen to the patients themselves to become advocates and raise awareness for rare diseases. But here’s the interesting part: Because there are around 7,000 different kinds of rare diseases, the number of people in the population who have been diagnosed with one is actually pretty high. It is estimated that around 1 in 10 people in the United States has a rare disease. 50% of rare disease patients are children. So, here we are… with this huge population of people who are unrepresented or underrepresented in the mainstream medical community. All these people want is a correct diagnosis, a good doctor, and some medicines to treat the disease. Yet it is a struggle to get all three. This is especially true for children who cannot articulate their symptoms well and cannot advocate for themselves. (Disclaimer: statistics vary by country.)

You can find our extensive list of Rare Diseases and Genetic Disorders HERE.

Rare Diseases and Genetic Diseases - Zebra VS. Blue Jeans

Many rare diseases are also considered genetic diseases. This has created a great deal of confusion when it comes to the appropriate awareness ribbon color. Should you pick the zebra awareness ribbon for rare diseases or the blue jeans awareness ribbon for genetic diseases? This comes up a lot. The truth is that you can use whichever awareness ribbon you prefer, but if you’d like to find the awareness ribbon category your disease falls under CLICK HERE. Around 80% of rare diseases are genetic.

Some rare diseases have organizations that have been able to raise enough awareness to be more visible than others. These diseases typically have their own special awareness ribbon outside of the zebra awareness ribbon. They have become the bigger fish in the small pond (assuming 7,000 fish can be considered a small pond. To be honest, I’m not really sure about the average number of fish in different sized ponds, so please forgive me if I’m wrong and focus on the metaphor.) Personalized Cause is currently working on the most extensive list ever of all diseases and the corresponding awareness ribbon colors for that cause. You can find the Rare Disease Master List HERE.

I bring this up for a couple reasons. Reason One: Raising awareness for each of these diseases is crucial in being able to treat and potentially cure them. It is also likely that a lot of these diseases could have shared treatments, and understanding one may lead to a breakthrough in another. It’s a “one for all, and all for one” situation. Reason Two: An awareness ribbon is a surprisingly powerful way to do that. You’d be surprised how many communities have been educated by one person with a ribbon who’s willing to become an advocate. On that same note, people tend to really empathize with a cause when they can put a name or face to it. People are generally good. They want to help. But it’s hard to become invested in a cause that you don’t understand when you can’t imagine the people affected by it. Personalized awareness ribbons are a great way to overcome that. CLICK HERE to see our personalized awareness ribbon "Pin-stagram" gallery.

Rare Disease Day

Another way the rare disease community raises awareness is with Rare Disease Day. Rare Disease Day is held annually on February 28. Everyone under the rare disease umbrella comes together to raise awareness, share their stories and wisdom, tips and tricks, and raise money for research and development to advance treatment options for patients.

Fun fact about Rare Disease Day: As I mentioned earlier, Rare Disease Day is held every year on February 28th. February 28th was chosen for a very specific reason. February 28th is the last day of February… most of the time. The first ever Rare Disease Day was held in 2008 on February 29th, also known as leap day. They held Rare Disease Day on a day that only comes around every 4 years, in other words a rare day. Since then, Rare Disease Day has been celebrated on the last day of February, which is usually the 28th. The next Rare Disease Day to take place on February 29th will be in 2020. Mark your calendars!

Rare Disease Day was created by EURODIS and began in Europe. The United States joined EURODIS in celebrating Rare Disease Day the following year. It has since become a worldwide event with over 90 countries participating. Every year Rare Disease Day events and media reach hundreds of thousands of people, which is a major win in the battle to raise awareness.

Participating in Rare Disease Day

There are lots of things you can do to participate in Rare Disease Day. Patients and individuals can sign up to host an event to raise awareness or a fundraiser. Remember the ice bucket challenge? Well, Rare Disease Day has a similar viral campaign. People participating in Rare Disease Day paint their faces and post photos of themselves on their social media accounts, using the hashtags #RareDiseaseDay and #ShowYourRare. This face paint social media campaign is a way to show support, raise awareness, and share your story. You can also upload your photo directly to their website, which is a really cool way to share your health journey with others who may find similarities and hope in your experience.

Click here to visit

Raise Awareness for Rare Diseases - Be an Advocate!

Sharing your story can have a huge impact on the people who identify with your story. When I was young, somebody told me that I should be open about my health and my journey because you never know how much someone may need to hear what you have to say. It always stuck with me. As I got older, I realized how true it was. There have been a handful of moments in my life when somebody said something that resonated so deeply within me that it actually changed my perspective and my life. They weren’t even anything particularly insightful. They just happened to be what I needed to hear at that moment to feel validated and inspired.

Becoming an advocate is making the decision to put yourself out there in hopes that you may help others. Being an advocate can be on a personal level, by educating those around you, or on a public level, by sharing your story with the world. There is no wrong way to advocate for yourself and others. I encourage everyone on a personal health journey to share your story. The benefits are far-reaching, for you and for people you may not even know. Nothing will make you feel more supported, reassured, and understood than talking to a community of people who have dealt with something similar. And, like I said, you never know how your words may impact someone else.

On that note, I’m going to wrap up today’s blog. I’d like to leave you with a quote that I stumbled across on the Global Genes website, which is an organization for genetic diseases, many of which are rare diseases.

“When “I” is replaced by “we” even illness becomes wellness.” -Sushan R. Sharma