Its been awhile but I have lots of information I learned at the conference this past weekend in Boston.
1st and foremost, even for the summer Boston is cold. Not an ideal place to hold a conference for people that suffer Raynaud's.*look it up* Anywho, I was so excited to be in Boston, birthplace of America and most importantly home of "Cheers!"
But I was there for something more important than these two things...I was there to learn more about my disease and meet people who also suffer from it. My 1st day/night there I was really weary about the possibility that I would get much from the conference because at first glance it seemed that everyone knew each other. I felt like an outsider*again*. After sleeping it off, I woke up, ate breakfast and vowed that this day (the next day) would be totally different.
I met a couple from Florida, Wendy, the wife, lives with scleroderma amongst a host of other chronic diseases that has left her wheelchair bound but all in all she was very up beat. She even drank two glasses of wine, like whoa! lol.
I met a girl named Michelle from Colorado who lives with scleroderma but hasn't allowed it her to slow down her career as respiratory therapist. I was amazed and inspired by her drive. Her advice to me, "Start physical therapy. Your range of motion will definitely increase!"
I met a woman named Susan from Los Angeles who also lives with the disease but is also very driven. She is a doctor and runs her own clinic that specializes in chronic diseases. I was very awestruck when I read her card. She and Michelle provided me living proof that life doesn't stop after being diagnosed w/scleroderma. It actually is just beginning.
I met other people but these were the few I took away the most from.
As far as the workshops I learned a great deal. For instances, I have the same chances as a healthy woman in regards to childbearing. I need to start routinely taking all my medications prescribed (duh!). In order not to permanently damage my small intestine and esophagus with my acid reflux, I need to take that medication and sleep with my head elevated. I learned that African-Americans usually have a worse prognosis than Caucasians. 4 out of 10 people with scleroderma who apply for disability WILL get it the 1st time applying. I learned how to take better care of my teeth and mouth for dental visits.
I learned so much, I could go on and on.
The unfortunate news I learned during my weekend in Boston was that researchers still don't have a clue what causes the disease as well as the onset. This bothers me especially with doctors presenting 25yrs + of their personal research at the conference but they were unable to say what the source was. How can you research something for so long and still not able to identify or narrow down key characteristics, genes, factors, etc. that lead to a person having scleroderma.
So...with that said, I guess I will do my best to go to next year's conference in San Francisco so I can attend the workshops I wasn't able to attend this go round.
*p.s. Cheers does not look like the show. I was told that actually set was upstairs or something.*
p.p.s. another name for Scleroderma is Systematic (or Systemic) Sclerosis
Peace
