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 of my treatment options for my circulation and am now turning to clinical trials for help to save my hands. I will be driving to Springfield, IL to receive BOTOX injections directly into the nerve bundles of each hand in the hopes that it might relieve the chronic pain I feel and also improve blood flow to my fingers. There is no cure for Scleroderma and often times the treatments available are not adequate and that is why research is so very important.
Today I am embarking on my very first fundraising activity for the Scleroderma Foundation and I want to make it count! I am trying to raise money to participate in an upcoming even called Food Fight for Scleroderma on April 27, 2014. All proceeds from the event benefit the Scleroderma Foundation of Greater Chicago. Every dollar you contribute and every person you tell makes a difference, so thank you in advance for your love!
Check out the links to learn more about the event and the organization it is benefiting.
- Jeff & Tami Harpole
- hannah shaner
- Jeff Johnson
- Jennie Atlogic
- Aunt Krystie & Uncle Mark Everett
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