Systemic Sclerosis

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    Community Voices

    Life is a balance between letting go and holding on

    <p>Life is a balance between letting go and holding on</p>
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    Community Voices

    I’m new here!

    Hi, my name is podipsy. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #SystemicSclerosis

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    Community Voices

    My Rare Disease Confession

    “Here I go again,” I mumble to myself as I hit “join” on another support group.  It was 11 years ago that I tested positive for RheumatoidArthritis (RheumatoidArthritis).  When I say I tested positive, RheumatoidArthritis was found in my blood which means that I carry the blood antibodies for RheumatoidArthritis.  RheumatoidArthritis can be classified in two ways, seropositive and seronegative.  “Sero” representing blood.  If you are reading this and do not fully understand RheumatoidArthritis please know that just because a patient doesn’t test blood positive for RheumatoidArthritis that doesn’t mean they do not have it or do not have it as badly as a blood positive patient.  Seronegative patients battle arthritis and inflammation just as real as seropositive.  Actually, being seropositive like myself in my opinion is a little easier because our diagnosis comes a bit quicker than those who are seronegative.  And physicians outside of our Rheumatologists understand our RheumatoidArthritis diagnosis because they can see it in our blood.  Oftentimes seronegative patients end up having to educate their non-Rheumatologist physicians.

    It was 3 years ago that I tested positive for SCL-70 which is a blood antibody associated with a RareDisease called Systemic Sclerosis or Scleroderma.  Scleroderma unlike RheumatoidArthritis is not a diagnosis given from a blood antibody alone meaning just because you have the blood antibody doesn’t mean you have the disease.  For one to be diagnosed with Scleroderma one must show symptoms other than a blood antibody.  So for me, we called my SCL-70 blood antibody finding “SCL-70 positive” for a while after rerunning it to make sure it was not a false positive.  One might question why my Rheumatologist decided to rerun my blood antibodies since I was already diagnosed with RheumatoidArthritis.  I had developed lung issues, GI issues and skin issues that prompted the re-run of my blood antibodies.  RheumatoidArthritis can cause those issues but my increasing issues were not presenting like RheumatoidArthritis and I was already taking a DMARD and a biologic, which are RheumatoidArthritis medications.

    It takes a very experienced Rheumatologist to know what to look for when it comes to diagnosing Scleroderma and takes an experienced Rheumatologist to treat it as well.  When my blood antibody for SCL-70 came back positive, I watched as my Rheumatologist called in a colleague to consult on treatment and check my nail capillaries.  In patients with Scleroderma, the nail capillaries (only seen under magnification) have changes that are consistent with a diagnosis.  It was then that I felt maybe this was a significant step in my autoimmune disease journey.  And as my medication changed to treat my lungs and skin, which seemed to be taking the biggest hit, I heard the pharmacist say “Elaine, I am so sorry.”

    For about a year I was angry.  I had already been living with one life impacting autoimmune disease, why in the world would I be given another and one even more life impacting than what I was already dealing with?  I was angry that I had followed all the steps to treat my RheumatoidArthritis, to live the best quality of life, and I still got something “worse” which is what Scleroderma felt like.  Autoimmune disease is not a competition but at that moment, in my anger, it felt like it was.  I felt angry every time someone asked me if my RheumatoidArthritis was doing better or asked why my RheumatoidArthritis medications weren’t working like they had before.

    Then the second year came, that was the year I felt denial.  I continued to take Scleroderma medication daily but told myself “if I don’t think about it, it will go away.”  I worked diligently advocating for RheumatoidArthritis awareness something I had already been doing.  I didn’t speak much about my Scleroderma issues.  And each time something would pop up I would just blame RheumatoidArthritis like I had before the SCL-70 had been found.  I reverted back to calling my “other” issue “SCL-70.”  I quit asking my Rheumatologist if the SCL-70 blood finding was just “a mistake” and decided in my head I would just ignore it not bringing it up too much.  In a sense it was ignoring the elephant in the room.  Please don’t think my Rheumatologist was ignoring it, he is a better physician than that.  He would often say “we need to watch for Scleroderma Renal Crisis” or “that is your SCL-70 overlap diagnosis.”

    Well, ignoring it didn’t work because in the last year I have realized that my Scleroderma diagnosis is very real and very life impacting.  Often times my friends and family ask why my RheumatoidArthritis medications are not working as effectively as they did before or why I seem to be getting sicker each month.  Friends and family, perhaps I have not been totally honest with you so this is my honest confession.  It isn’t unusual for a patient to have more than one autoimmune disease, they often come in pairs or multiples.  I have tried to keep my Scleroderma diagnosis private since I have always been scared to share my diagnosis for fear my friends and family might think “she has another thing.”  But, I do…I do have another thing.  This is not attention seeking but to say that just sometimes advocates don’t share their whole story.

    So as I hit “join” on another support group, I am taken back to being a newbie at things.  Learning all I can about Systemic Sclerosis and how to best gain quality of life with my new diagnosis.  I truly believe the saying that “knowledge is power.”  I am no longer angry or in denial so now is my time to speak openly about Scleroderma and be an advocate.  My name is Elaine Wiley, I have RheumatoidArthritis and I have Scleroderma too. #Scleroderma #RheumatoidArthritis #RheumatoidArthritis #ChronicIllness #RareDisease

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    Community Voices
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    Community Voices

    I’m new to The Mighty. I didn’t even know this existed! I have Systemic Scleroderma with Pulmonary Fibrosis and other issues related to those two major illnesses. I have two children that have seen more hospitals and doctors offices than most adults. They know how to change my oxygen hoses and used my IV poles as scooters when they were little. I am here to get advice and ideas on how to live with this disease. I’m happy to give advice to anyone who is living with or recently diagnosed this chronic disease

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    Community Voices
    Chanel White

    Crowdfunding for Your Rare Disease Treatment

    Did you ever take part in the school fundraisers your junior high might have put on? The ones where you would go around and ask your neighbors, your coaches, and your parents’ friends to give you money for overpriced items such as magazines, wrapping paper, or cookie dough? You were embarrassed, but you really wanted that hamburger-shaped phone you would win at 30 items sold! Now imagine the stakes were a bit different: you are asking for money with nothing to give in return, and the prize for receiving the right amount — is your life. That is what it’s like running a crowdfunding page such as GoFundMe, YouCaring, or GiveForward. I cannot tell you the cringeworthy, slimy feeling that shivers down your spine when you must crowdfund from those who already do so much to love and support you, in order to simply afford necessary medical treatment. My failing body asks much physically and emotionally from those around me, and now I must drain them financially as well? How is begging the community to open their wallets because I became unexpectedly ill and do not want to die fair to me, or those donating? It leaves me conflicted, knowing they are sacrificing so I can live. I feel a bit like a panhandler begging to receive others’ hard-earned money with nothing to give in return. I know when someone donates to a crowdfunding site, they genuinely want nothing more than to see your treatment succeed and for you to lead a happy life lacking disease. However, it still eats me up knowing I have no way to repay their kindness. They are literally giving me life, and all I can do is say, “thank you.” I am a patient living the reality of not being able to afford life-saving treatment because of its incredible cost. I am a patient who relies on crowdfunding, and the grace of others to keep me alive. You see, I am losing a battle against an aggressive autoimmune disease known as systemic sclerosis and unable to work. I am on oxygen, a feeding tube, and receive weekly visits to my home by a nurse for infusions. I am only 25. Rare disease patients like myself often require expensive medical interventions in their lifetime, but over 95% of rare diseases don’t even have an approved treatment. Insurance has deemed almost every life-altering procedure, treatment, medication, and surgery that would benefit me, “off-label,” and “experimental.” Therefore, the burden of the cost lays solely on the patient’s shoulder. Our lives literally depend on crowdfunding, which can defer our treatments by months. I find myself in this situation currently. Instead of receiving immediate treatment, my life-saving stem cell transplant will be delayed, simply because insurance doesn’t want to invest in a rare patient. I must fundraise the immense cost on my own. It is not only overwhelming for me, but also for my family who has to watch as I slowly deteriorate while awaiting the “goal funds” to be raised. High treatment costs, and health insurance inequalities force patients into situations such as bankruptcy, eviction, and even death. These are devastating epidemics that plague patients throughout the country. We live in a society where lower and middle class individuals pass away from treatable illnesses, even though we have advanced medical technology available. And this is simply because patients cannot afford it. Crowdfunding has changes the lives of an uncountable number of patients; it has literally saved many of them from death. However, the fact that crowdfunding is the deciding factor in which a patient lives or dies is a terrifying thought. That being said, to anyone who has ever donated selflessly to help a patient in need, thank you. You have made a serious difference in someone’s life that may have otherwise been lost. Visit Chanel’s YouCaring Site

    Chanel White

    Rare Disease: Please Stop Saying ‘At Least It’s Not Cancer'

    As a young bride barely off her honeymoon, I was diagnosed with a rare illness and told I would be lucky to see the age of 30. My disease quickly took essential functions I never realized were a true privilege. Eating — biting into a delicious, juicy cheeseburger — abruptly become impossible. Now I had a tube. Breathing, simply walking and talking to an acquaintance, became unfeasible. Now I had a tank. My months suddenly consisted of 16-plus doctor’s appointments and a bombardment of constant procedures — just to stay alive. Chemotherapy wracked my fragile body every month in an attempt to destroy my malfunctioning immune system, which believed my crucial organs, blood vessels and skin were foreign invaders. In an instant, it felt like my life, my husband’s life and my family’s life were destroyed. Yet, through this unbelievable grief, pain and struggle, those around me seem to believe my illness, the fatal illness that seized my body and destroyed the quality of life I had left to live, was somehow less tasking than another. “At least it’s not cancer.” While many individuals are genuinely trying to be supportive by saying this phrase, it comes off as anything but. The statement can bring on genuine emotional distress to those enduring rare illness, making them feel as though their anguish isn’t important. Stating that one’s disease is less distressing than another is not only unhelpful to a patient’s situation, but extremely prejudiced. The phrase is frequently based not on facts regarding both illnesses, but on one’s general understanding that cancer is deadly and its treatment is harsh. With media attention focused heavily on the devastation of cancer, I believe society has no idea how life-altering and fatal other diseases can be — because they don’t know about them. Comparing diseases is a disrespectful habit many people do not even realize they have formed. Many illnesses, such as systemic sclerosis, which I suffer from, are rare. There is a lack of knowledge regarding their severity and detriment to the body. While you may never have heard of this illness, it does not mean I am better off than if I were to be suffering from cancer. The truth of the matter is — many diseases can destroy lives. Please be aware that I am not writing in an attempt to sway readers that one disease is worse than another — I’m writing to show the similarities that rare illness and cancer patients share. Hopefully, this awareness can bring about a positive change in the way we support all individuals fighting disease. Let’s look at a few of the similarities between cancer and my illness, systemic sclerosis: 1. Both diseases, depending on the severity or form, can severely limit a patient’s quality of life. Both can strip away a person’s basic human functions, such as breathing and eating, as well as their mobility, appearance, independence, social life, business life and financial stability. Many rely on medical equipment like oxygen tanks, central lines and feeding tubes, as well as an overwhelming amount of medication and skilled physician care. 2. As in cancer, many systemic sclerosis patients can undergo intensive chemotherapy and even stem cell and bone marrow transplants. They might lose their hair, their fertility, spend countless hours vomiting, and experience other horrendous side effects from these treatments, including death. 3. Many people have been affected by cancer mortality in some way, whether it be a loved one, a friend or a coworker. You may know someone who has passed away due to cancer. Systemic sclerosis, and rare illnesses like it, can also be life-threatening. Many patients might face a short prognosis upon diagnosis. The reality is, both diseases have different stages, and forms, leaving some patients a prosperous prognosis and others a poor prognosis. A patient’s quality of life, their treatments plans, and overall outcome varies greatly depending on the organs affected in both cancer and rare illness. Please recognize that comparing one’s illness to another is not an appropriate way to console a suffering individual. Would you ever express to a cancer patient, “At least it’s not ________”? More than likely the answer is no, so let’s break this negative habit. Everyone fighting a battle deserves to be respected and extended empathy, whether you have heard of their illness or not. Editor’s note: This story replaced a previous version that omitted some details. See the full post on Chanel’s blog, The Tube-Fed Wife. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.