Saturday, June 19, 2010

Scleroderma Awareness

I think most of you know now that Kelli has scleroderma. We want to do our part to raise awareness and to contribute to finding a cure for this autoimmune disease. One week from today there is a "Stepping Out to Cure Scleroderma" Walk/Run in Syracuse, Utah (there are also other similar events around the country). If any of you want to show support and attend, we would love to see you there. For those who would like to contribute to the cause but can't attend the event, you can also donate on this page that we have set up in Kelli's name. As I'm sure all of you would expect, Kelli has been awesome at dealing with the disease. It has definitely taken its toll on her health and stamina, but she doesn't let that get in the way of being a kick-butt mother and wife (not to mention that she has kicked my butt a time or two). She is seeing a specialist in Salt Lake who has been great, and she takes a gazillion pills a day. One of these days she is going to gag, because she seems to take them all at the same time. Us humanoids can't swallow that many pills at the same time. One perk in all of this is that we scored a temporary handicap parking pass (I'm allowed to joke about that, right?). We're hopeful that the medication Kelli is currently on will continue to relieve the pain and treat the symptoms. I'm proud of Kelli's attitude and determination. Felicity and I love her more than anything. Help us find a cure.
  • I found a great article on scleroderma in the The New York Times.
  • Here is a good story about someone who has scleroderma and how they treated it.

Below is a picture of how it can start to affect your skin. The skin can tighten significantly and deteriorate the function and flexibility of your hands for example.



Here is a good brief description of the disease:

Scleroderma is a chronic autoimmune disease characterized by hardening and thickening of the skin. There are two major classifications of scleroderma: localized, which affects the skin only, and systemic scleroderma, which affects the blood vessels and internal organs. The symptoms may be mild or severe. Progression of the disease may affect the ability of some patients to carry out everyday tasks. Complications of systemic scleroderma may lead to serious problems of the major organs in the body. There is no cure for scleroderma, but treatment can relieve its symptoms.

2 comments:

LisAway said...

I am now more aware. It sounds like you have a very good attitude. Here's hoping and praying for a cure and for your continued positive outlook and symptoms as mild as possible.

Marissa Joy said...

Kelli you really are awesome and I am blown away by all the things that you do and what a good attitude you have! You are my best friend and I will be there whenever you need me!