Scleroderma, meaning "hard skin" is a rare autoimmune disease involving the gradual hardening of the body's connective tissues. Diagnosed at the age of 11, I have been fighting my battle with the disease for 15 years now. Scleroderma can manifest in many ways but personally I suffer from a systemic form which affects my internal as well as external organs. The disease has affected my digestive system by shrinking my esophagus and slowing down or sometimes stopping the digestive movements, my pulmonary system by hardening my lungs and restricting my breathing, and my circulation by constricting my blood vessels and severely restricting blood flow to my extremities. My skin is hardening and shrinking, especially on my hands and face and my joints are stiff, swollen and painful. My mouth barely produces saliva and that is causing a great deal of tooth decay and other dental problems, not to mention is uncomfortable. Pain and fatigue are part of my daily life. My drug cocktail is at 16 pills and counting and often comes with it's own set of adverse drug reactions. I have recently exhausted all treatment options for my circulation problems (called Raynaud's Phenomenon) and am now turning to clinical trials for help to save my hands. I have been participating in a clinical trial which is testing the effects of BOTOX injections on ischemic digits. BOTOX has shown very promising results and would be an excellent treatment option for me. I drive to Springfield, IL to receive four nerve-block injections into my wrists followed by 10 BOTOX injections directly into the nerve bundles between each of my fingers. The hope is that the drug might relieve the chronic pain I feel and also improve blood flow to my fingers. During the first phase of the trial I have a 50/50 change of receiving a saline placebo instead of the actual drug. However, after the first 28 days I find out which injection type I got and have the opportunity to receive up to 4 treatments with the acutal drug within the first year. After the first 4 injections the drug is no longer free and is also not covered by insurance. The out of pocket costs for each treatment is at least $900 and treatments are administered once a month. My last fundraiser for the Scleroderma Foundation was a great success but many people have expressed interest in making donations directly to me to help with any medical bills. The money raised in this fundraiser will go directly towards my BOTOX treatments. My goal is set at $12,000 because that is about what it will cost over a year. Give up your next cup of overpriced coffee or you next drive through meal and donate a few bucks. If you can't do that, please share my link and help spread the word. Thank you in advance for all your generosity and support!
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