The Ice Bucket Challenge is going to help the ALS Association get closeer to a world without ALS. Before you add the ice, take a few minutes and read how dumping a bucket of icewater over your head will help patients with scleroderma and other diseases, as well. Then, enjoy your dunking!
My body has changed a lot over the last 20 years. My hands are severely contracted. I have been offered surgery to straighten my fingers, permanently and bending the top knuckles in a “hook”. I was told my hands would be more useful. I have refused this procedure more times than I can count. I refuse it because I believe that this is a plateau. Of course, I will never regain full use of my hands before scleroderma, but I still call it a plateau. Progress is progress.
Not only have my hands been damaged,there is scarring in my lungs. In 2008-2009, the scarring in my lungs accelerated. We don’t know why, but for some reason, it stopped. The bottom left lobe is scarred, and the short answer is my lung volume is 85%. I had been diagnosed with sarcoidosis in 2007 and was put on the biological drug, Influximib, brand name, Remicade. It may be related to many symptoms being controlled but there is no way of really knowing, without further study. Like ALS and cancer, scleroderma is very complicated. All diseases are different, but none is more serious than the other. Like everything different, we can find things in common. By doing so with diseases, we improve care. In other words, patients of all diseases benefit from breakthroughs in research of different diseases.
Cancer is nothing like scleroderma, but what we have learned from cancer research benefits patients of both scleroderma and ALS. Progression of scleroderma is slowed down by drugs that suppress the immune system. I sometimes wonder if I’m grasping for straws, but as someone who has spent many hours sitting next to cancer patients, receiving immunosuppression drugs (aka chemo infusions, but not cancer chemo), I’ve seen enough to know that as horrible as cancer is, I have benefited more than I will ever know from past cancer patients. Oncology nurses , who specialize in cancer care, are amazing, and I have never had to train an oncology nurse on how to put in an IV. I’ve had to train calm down a lot of nurses many nurses because of their lack of experience starting an IV in patients with thickened, hard skin. Thanks to an IV nurse’s suggestion, I have a port-o-cath. It had once been suggested to me by a rheumatologist, and I refused. I felt that getting a port-o-cath meant I was near the end. Getting that suggestion from an oncology nurse in a room full of chemo patients, allowed me to ask about use not just from the nurse, but from patients sitting next to me. Now, the port I have in my chest to allow the ease of IV medication, was not designed to help patients with scleroderma. The inspiration for use doesn’t matter, because the principals are universal. It was put there because doctors know that a port-o-cath would make it easier to administer IV medication, reduce stress, infection and keep my otherwise overused veins, intact. Of course, my rheumatologist happily ordered the procedure for me. It didn’t matter to them nurses made it easier for me to understand, they were just happy I was taking a positive step to make my life a little easier. And, I was really relived when I saw that my cleavage is still spectacular with a port-o-cath.
What about long term patient care and hospice. These things are all needed by many patients with scleroderma, but scleroderma is so rare compared to cancer if there were no cancer treatment, there would be no scleroderma care and treatment. We have also learned a lot from ALS, or Lou Gehrig’s Disease. Do you see the connection? Care and so much more.
So please, take The Ice Bucket Challenge, and help to create a world without ALS. It helps us all. But I would be crazy not to mention that I am raising funds for the Scleroderma Foundation. My son and I will be walking this Saturday in San Diego, California. So please donate to ALS Assciation, then please visit my donor page and donate a dollar or two. I’m asking for such a small donation, because there are many diseases that need curing and a dollar or two leaves you the option to donate to another association. No disease needs more donations than any other; all of these diseases need to be cured. In addition to research, non-profit associations, foundations and organizations also provide doctor, patient, caregiver support and education. We may not be fighting the same battles, but we are all in this war together. Thank you for reading.