Scleroderma (skleer-uh-dur-muh) is an autoimmune,rheumatic, and chronic disease that affects the body by hardening connective tissue both externally and internally. There is no cure or real treatment for this disease doctors can only treat the symptoms.
May 2006 at age 18 I was diagnosed with Scleroderma.
Since.... My disease has progressed alot and has started to affect my organs. Not only do I have Sclero. but I have some of the other disorders connected to it such as Raynauds which causes poor blood circulation to fingers and toes. I have had 3 toe amputations and 1 finger removed due to this. I have scarring in my lungs (Pulmonary Fibrosis) and I recently found out my esphogagus no longer contracts and that I will need a feeding tube in the near future. Scleroderma also changes your physical appearence due to the body producing too much collegen. My fingers have curled into my palms and I am no longer able to open them or ball them into a fist caused by the skin tightening and RA. It makes everyday tasks difficult and I often have to ask for help doing simple things like opening or picking up things I drop. Ive lost alot of my indepence from this horrible disease and everyday it tries to steal something else but I refuse to let it take my will to keep fighting.
I would like to attend the Sclero National Conference because..
I'll get to meet other Sclero patients from all over and get the chance to hear about new research and clinical trials. Also learn about different thearpies currently being used.
I've only ever met one other patient in my area with sclero and there are no support groups near or around my area or even in the entire state of MS. At the conference I hope to learn ways to increase public awareness of the disease, because one of my goals is to start a Scleroderma chapter support group for MS and connect with people all over the state and to let them know they are not alone like I felt for the longest time. Over the years I have joined support groups on facebook and have made friendships with people from all over the world. Some of them will be attending the conference and it would be really awesome to get the chance to meet them in person!
Due to medical needs and exspenses I am unable to afford the cost of this trip on my own. I would be incredibly grateful for even the samllest donation. I love you all and your love and support is what keeps me fighting for my life!