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Cause Awareness Blog | Support the Struggle | Personalized Cause

Our cause awareness blog provides knowledge and educational information to advocate for cancer, medical, social and psychological illnesses and/or causes. 

Filtering by Tag: chronic fatigue

Multiple Sclerosis Awareness Month

Davis Orr

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March is Multiple Sclerosis Awareness and Education Month!

Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

The cause of MS is still unknown – scientists believe the disease is triggered by as-yet-unidentified environmental factor in a person who is genetically predisposed to respond.

The progress, severity and specific symptoms of MS in any one person cannot yet be predicted. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease.

Within the CNS, the immune system attacks myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a wide variety of symptoms.

(Content: nationalmssociety.org Image: vice.com)

#multiplesclerosis #ms #curems #awareness #education #brainfog #health #chronicpain #chronicillness #nerves #damaged #brain #cns #nervoussystem #brainfog #mswalk #msfighter #personalizedcause

Rare Disease Day

Davis Orr

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Today is Rare Disease Day!

NORD is the official US sponsor of Rare Disease Day®, which occurs on the last day of February each year. On Rare Disease Day, millions of patients and their families around the world share their stories to promote awareness of the challenges, hopes and needs of those living with rare diseases.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases affect children.

Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.

Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.

The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families. Doctors are taught, "when you hear hoof beats, think horses not zebras." This is why those with rare diseases often refer to themselves as zebras and wear zebra print awareness pins.

#rare #raredisease #rarediseaseday #disease #disorder #genetic #geneticcondition #geneticdisorder #zebra #zebraprint #awareness #cure #treatment #medicine #uncommon #illness #chronicillness #chronicpain #personalizedcause

Invisible Disability Awareness Week

Davis Orr

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Yesterday marked the first day of Invisible Disabilities Awareness Week!

Each year, people with invisible disabilities and their loved ones come together for Invisible Disabilities Week, a time to educate the general population about the challenges they face and the progress society still needs to make towards acceptance.

It’s a time to break down the belief that people with invisible disabilities are “exaggerating” or “faking” their symptoms, and start a discussion about what inclusion really means. So this week, the community works to raise awareness of their invisible conditions and how their conditions affect their lives, as well as offer their recommendations for how to make the world a more inclusive place.

(Content: Erin Migdol via themighty.com Image: thepioneeronline.com)

#invisibleillness #invisibledisability #invisibledisabilities #invisibledisabilitiesawarenessweek #spoonies #arthritis #fibro #fibromyalgia #mentalillness #depression #anxiety #pots #autoimmune #crohns #deaf #hearingimpaired #spectrumdisorder #autism #learningdisabilities #diabetes #diabetic

World Sickle Cell Awareness Day

Davis Orr

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Today is World Sickle Cell Awareness Day!

Welcome back, everybody! I’m so glad you’ve joined us. I know last week was packed full of awareness blog posts, and I hope it didn’t overwhelm anyone. I just wanted to make a point to address Men’s Health as comprehensively as possible because many of the top ten causes of death are preventable if you know what you’re at risk for, and make the appropriate lifestyle changes. I also wanted to call attention to some uncommon health and/or awareness observances, because we’re all about awareness here and teaching people about things they’ve never heard of before is kind of the whole point. Of course, it’s important to raise awareness about common issues that affect the community as well, so that we know how best to help ourselves and help others. Today we’re going to discuss sickle cell disease in honor of World Sickle Cell Awareness Day!

Sickle cell disease is a genetic disorder that affects the red blood cells. Sickle cell is caused by defective hemoglobin genes. People inherit two hemoglobin genes, one from each parent. If only one of the hemoglobin genes is defective, the person will carry the sickle cell trait, but they will not experience symptoms. Carrying the sickle cell trait means that you can pass it on to your children. Sickle cell disease occurs when both of the hemoglobin genes inherited by their parents are defective. This defect causes the shape of the red blood cells to be deformed, causing them to function abnormally and die too quickly. The deformed red blood cells take the shape of a sickle. If you are unfamiliar with what a sickle looks like, it’s sort of similar to a crescent moon shape. Healthy red blood cells live for around 120 days, and then they die and are replaced with new ones. A sickle cell only lives for a maximum of 20 days. The shape of the cell also poses another problem, which is that the shape can make it difficult to travel through blood vessels. Sometimes, sickle cells get stuck and create a blockage of blood flow. Blockages in the blood vessels can lead to an inadequate amount of blood circulating through the body. This decreased blood flow to organs, muscles, and bones can lead to potentially life threatening health issues.

The most common symptoms of sickle cell disease are anemia and painful occurrences in the extremities, such as the hands or feet, or in the back, stomach, or chest. These painful events are called a sickle cell crisis. Chronic anemia caused by sickle cell disease can lead to fatigue, weakness, jaundice, shortness of breath, and a pale appearance. With severe anemia caused by sickle cell disease, pulmonary hypertension can be caused. Pulmonary hypertension is when high blood pressure occurs in the lungs. This can be very dangerous, and even fatal. Sickle cell crisis occurs when the sickle cells build up in the blood vessels and block the blood flow to certain parts of the body. These sickle cell crisis symptoms can be extremely painful, and may require a stay in the hospital. Sickle cell crisis can last anywhere from a couple of hours to days on end. They may occur very rarely or frequently, depending on the patient. Each patient is affected by sickle cell disease. There is no way to predict how any patient will present or how severe the disease will affect them. Only time will tell. Sickle cell disease is a chronic illness and a lifelong battle against symptoms of the disease. People with sickle cell disease have to fight severe pain, anemia and the symptoms that accompany that, infections, and stroke. Like many other chronic illnesses, sickle cell disease can be managed and patients may lead normal lives. Patients will have to be vigilant about adhering to their treatments in order to maintain relative health. Most patients learn how to manage the disease and adapt their lives to accommodate their health, without having to sacrifice the things they love. Likewise, some people suffering from sickle cell disease may be affected severely and may be unable to work, or they may need help. Preventing sickle cell crisis is always the number one priority.

Recognizing and seeking treatment for sickle cell crisis is imperative. The following are symptoms one might experience during a sickle cell crisis: • Chest pain or shortness of breath. This may subside on it’s own, but it is still important to call the doctor managing the disease and inform them even if the symptoms go away on their own. That goes for all of the symptoms listed here. Do not mistake the symptoms disappearing for a sign that you are fine. • Severe pain in the abdomen. • Severe pain in the hands or feet. • Severe back pain. • Unexplained weakness or sudden weakness. • Tingling in the hands or feet. • Numbness in the hands or feet. • Sudden difficulty with coordination and balance. • Confusion. • Difficulty speaking/jumbled speech or an inability to talk. • Sudden vision changes. • Severe headache. • Fever over 101 degrees • Severe cough. • Loss of consciousness. • Vomiting. • Diarrhea. • Lightheadedness or dizziness. • Enlarged spleen. • Erections that last longer than 2 hours/very painful erections. • Severe pain that cannot be controlled with the usual method of pain management, either over the counter or prescription. • Frequent urination and open ulcers are also symptoms that need to be addressed by a doctor.

Sickle cell disease can be diagnosed with a simple blood test. Currently, most states in this country screen newborn babies for sickle cell disease before they leave the hospital. Babies can also be tested for the disease before they are born. Parents who carry the trait may want to seek genetic counseling before becoming pregnant in order to discuss the chances of having a baby with the disease. People with sickle cell disease commonly experience pulmonary hypertension, which is high blood pressure in the lungs. This can be very dangerous, and potentially fatal, as I mentioned earlier. Pulmonary hypertension can be diagnosed early on using an echocardiogram, which is a painless test that simply measures blood flow.

Treating sickle cell disease requires routine doctors visits and routine testing, as most chronic illnesses do. There is no cure for sickle cell disease, so it must be monitored regularly in order to minimize potential for sickle cell crises. Generally, sickle cell disease symptoms are treated as they appear. Parents of children with sickle cell disease will have to become their child’s advocate and get informed about the disease in order to spot the signs and prevent infection, anemia, or sickle cell crisis. Children with the disease can sometimes develop more slowly, and hit puberty later than normal. Immunizations are critical for children with sickle cell. Because sickle cell makes it more difficult to fight off infections and viruses, immunizations must be kept up throughout their lifetime. Daily antibiotics for children starting at age two and ending at age five are used to prevent dangerous infections. Children between the ages of two and five are at higher risk of developing life-threatening infections. There is a medicine called hydroxyurea that is used to treat sickle cell disease. Multivitamin supplements with iron and folic acid are important during infancy, and into childhood. Some kids may need protein supplements as well, particularly if they are anemic or have difficulty gaining weight. Sometimes children regularly receive blood transfusions in order to prevent symptoms or stroke. Transcranial ultrasounds are a good idea after the child turns two years old. These ultrasounds are used to analyze blood flow in the head and neck arteries, to assess the child’s risk for stroke. Regular blood transfusions are one of the treatments used to lower the risk for stroke. Pain management doctors are an important part of dealing with sickle cell disease. Chronic pain is exhausting and stressful, but a pain management doctor can help by developing a plan for dealing with it. Painful episodes can be sudden and it is important to have a plan in place for when they occur.

That’s it for today, guys! Thanks for stopping by. Come back next week for more of the Personalized Cause awareness blog.

If you’re new to this blog, welcome! I’m thrilled you’ve stumbled upon us and decided to give this post a read. Let me introduce the company behind the awareness blog. Personalized Cause is an awareness accessory brand that specializes in custom awareness ribbons. Personalized Cause also carries a variety of other awareness accessories, such as classic awareness ribbons, fabric awareness ribbons, and awareness wristbands. Custom awareness ribbons are a unique product that allows customers to personalize their awareness ribbon with any name, date, message, or phrase they choose. This is made even more unique by the fact that there is no minimum order for custom awareness ribbons, so you may order just one, or a whole bunch with all different personalization. It’s completely up to you. Personalized Cause is a firm believer in the power of awareness. We have seen first hand how one awareness ribbon can impact an entire community of people. A symbol as small as an awareness ribbon can be a silent and powerful show of support, it can be a badge of honor, or it can be a tool used to educate others and raise awareness. Click the link below to check out our products. The Personalized Cause awareness blog is dedicated to raising awareness for as many causes as possible. Awareness is the key to understanding, acceptance, and compassion. I hope you’ll come back next week for another post.

Red awareness ribbons are used to raise awareness for Sickle Cell Disease. To order a custom red awareness ribbon, visit:

https://www.personalizedcause.com/personalized-awareness-ribbons/red-awareness-ribbon-pin-personalized?rq=sickle%20cell

#worldsicklecellday #sicklecell #sicklecellawareness #blood #genotype #chronicpain #chronicillness #WSCD2016 #helpstopthepain #sicklecellwarrior #awareness #awarenessblog #awarenessribbons #cancerribbons

Invisible Illness Awareness

Davis Orr

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Here's a little Invisible Illnesses Awareness to kick off your weekend!

Oh my gosh, you guys… I’m excited for today’s awareness blog post. I’ve received quite a few emails since my post two weeks ago about chronic illness and my synopsis of Spoon Theory. To be completely open with you all, it was a really important blog entry for me to write as someone who falls into the #spoonie category. Like many of you, I have struggled to find the words to accurately explain what chronic illness feels like to friends and family. When I found Spoon Theory, it was like all the sudden everything clicked. It’s powerful to be able to feel so represented by another person’s experience, and I was so grateful to finally have something to forward to people that captured the essence of the daily struggle. Finding the words to explain my chronic illness was difficult until I found Spoon Theory, and finding the #spoonie community was a complete game-changer. When you’re deal with multiple diagnosis, and rare conditions or abnormal presentations of illnesses, it can start to feel like you’re some kind of one-in-a-million freak. One of the greatest comforts I have found in the #spoonie community is that I’m really not that special. That sounds like a negative thing, but it’s actually very liberating to feel like there’s a group of people out there who are all just like you. You’re not the only weirdo, there’s actually a whole bunch of you. It makes the world suddenly less lonely, your conditions less scary, and it allows us to feel understood without explanation, finally. So, today’s awareness blog entry is going to expand on the chronic illness topic, because I see that it has connected with a lot of you.

Today we’re gonna talk about invisible illnesses/invisible disabilities. A huge chunk of the chronic illness community is suffering from an invisible illness or invisible disability. Invisible illness can sometimes be more difficult to deal with socially, because you get a lot of people who don’t take you seriously since, “you don’t look sick.” Not “looking sick” can be a double-edged sword. On the one hand, it’s nice that you can pass as a healthy person. It gives you a certain sense of freedom to be able to choose with whom you share your story, because others will not recognize that you are sick. There’s kind of a luxury to being able to go back and forth between the realm of the healthy and the realm of the chronically ill. It’s kind of like being a spy. You have a double life. On the other hand, it can make things much more difficult. In my own experience, I have had to convince people that I was actually sick. People assume that you are either weak or exaggerating since there are no physical signs that you are suffering. Another really fun assumption that people make about you is that you’re not experiencing fatigue, you’re just lazy. Even doctors, who should know better, sometimes don’t believe you. It’s pretty sucky to have to prove that you’re a member of a club that you don’t want to belong to in the first place (chronic illness/invisible illness being the club).

I’ll quickly share a personal story, which I don’t normally do, but it illustrates the issue. A couple months after I got my license, I decided to drive down to the coffee shop with my brother. I had been very sick and hospitalized off and on for months before that. Going to the coffee shop was a big outing for me at the time, sadly. I had a handicapped placard, which I needed. When I got there, I parked in a handicapped spot. There were a couple other handicapped spots open, but the regular spots were all full. When my brother and I got out of the car, a group of older people (seniors) started loudly talking to each other about me, essentially calling me a disrespectful teenage dirtbag (I was an honor roll kid, not a thug). As we got closer to them, one of the women started shaking her head at me in disgust, and said, “You know you can get a ticket for that, I should call the police.” I was completely frozen. I was so shocked that this group of adults was shaming me, and I didn’t know how to react. I was so full or rage and scared at the same time. What if the police came and didn’t believe me either? My brother looked at the woman and said, “She needs to park there.” I was relieved he said something because I didn’t know what to say. The woman then said, “She sure doesn’t look sick,” to which I replied, “thank you,” and walked inside. I could see that my response made her recognize that she had been wrong. The group quickly left before we came back out. This may not sound like that big of a deal, but there have been hundreds of situations like this in my life. Let me tell you, over time it fills you with anger and anxiety, and makes you defensive by default. It sucks to have to explain yourself to strangers that don’t deserve to know anything about you. It sucks to be judged by people who assume you’re a crappy person when you encounter them, while just trying to live your life. This is just one example of a scenario that people with invisible disabilities face constantly. It’s why this awareness blog is so important to me.

Enough about me, let’s get clinical. Invisible disabilities are usually caused by chronic illnesses. Having an invisible disability means that your normal daily activities are significantly impaired. Wanna hear a surprising statistic? Something like 96% of people living with a chronic illness do not have any outward signs that indicate that they are sick. That’s a gigantic number of people who are living with invisible illnesses. About 10% of people with a chronic illness are considered to be disabled from it. Invisible illness can be defined as a mental, physical, or neurological condition that impairs the person’s ability to move, affects their senses, or inhibits their ability to perform daily activities, that is not readily apparent to an onlooker. Having an invisible disability does not necessarily make the person disabled. That is an important distinction because sometimes people with invisible disabilities can often still work, maybe part time, or with accommodations. Sometimes the disability will improve and sometimes its severity will wax and wane. Each person’s unique invisible disability will affect them differently. So, just because you know one person with MS who was able to go back to work, doesn’t mean another person with MS struggling with an invisible disability will be able to. Many people with invisible disabilities are still active, and maintain involvement with their family and friends, even hobbies or sports.

Invisible disability symptoms can be chronic pain, chronic fatigue, cognitive impairments, or cognitive dysfunction, weakness or dizziness, brain injuries, mental health disorders, learning disabilities, hearing or visual impairment, and the list goes on. One of the major struggles for people with invisible disabilities is that people tend to have higher expectations of them because they cannot see, or forget that the disability exists. As a result, there are often issues with miscommunications, misconceptions, and misunderstandings. Never judge a person by what they look like. A person may look like they are unable to do something, when they are actually completely capable of it. Likewise, a person who may look capable of something may not be. Disability does not depend on outward appearance. Remember that.

Thanks for reading! I hope this unusually personal awareness blog entry helped to shed light on what it can be like for people living with invisible illnesses or invisible disabilities. I hope that some of you feel like I captured an important aspect of life with chronic illness well, and accurately. Feel free to send me an email about it. =)

See you all next week!

If you’re a first time reader, let me take a minute to tell you a little bit about ourselves and why we started this awareness blog. We are Personalized Cause, an awareness accessory company specializing in custom awareness ribbons. Custom awareness ribbons are a unique product that allow our customers to personalize their awareness ribbons with any name, date or message they want. Custom awareness ribbons come in all colors, and are engraved with your choice of personalization. Custom awareness ribbons are a wonderful way to express support when you may not know what to say. Awareness ribbons are a powerful symbol of hope and inspiration to others, as well as the person wearing it.

At Personalized Cause, we believe in the power of awareness. We have seen how one custom awareness ribbon can impact an entire community, and create a culture of compassion and understanding. Raising awareness is our mission. Only through raising awareness do we make progress in funding, research, and cures. We want to empower you, through our awareness products, to become an advocate for yourself or others. We use our awareness blog as a way to educate people about health issues that affect millions of people, in hopes that it may help them to recognize symptoms and prevent illness. We hope you’ll come back next week for our next awareness blog entry.

Invisible illness is represented by a peach awareness ribbon. To order a custom peach awareness ribbon, visit:

https://www.personalizedcause.com/personalized-awareness-ribbons/peach-awareness-ribbon-pin-personalized?rq=invisible%20

#invisibledisability #chronicillness #chronicpain #chronicfatigue #spoonie #spoonielife #invisibleillness #awareness #awarenessribbon #awarenessribbons #cancerribbons