Tuesday, February 28, 2017

Rare Disease Day 2017!

                                              So Today is rare Disease Day!
Why is this subject Close to my heart? Well, as some Of you know, I have a few Rare Diseases. I have Adult-On Set Still's disease or AOSD and as a Child, I had Systemic onset juvenile idiopathic arthritis Or sJIA. It's still Hard to see myself with any disease.
When I was young, I knew something was wrong.
Most girls my age did tea parties, but I wanted to stay in bed or under the covers, My parents just thought I was playing around or being lazy. I did play a little bit as a child. Later I played some sports as I got older, but I was always in and out of the Doctors and Hospitals. I don't even remember my childhood without thinking of a Doctors office, from 7 years to 13 years. then again from 16-20. Finally! I am only at Doctors not so many hospitals since then. When I first got diagnosed with Still's disease My Doctor here in town weren't sure. So then I did some research and but then I found out in Houston, which was three hours away.  I finally found a Still's disease specialist and we saw him, like after six months of trying to see him. He confirmed it and called my Doctor here and they talked it. He handed what he thought about it to my Doctor here So he could take care of me, He said there is no doubt about it, You have it. He said that it's rare in people that are Hispanic.  But there is a case of one such young woman in 1995 changed the whole thing. We should be very grateful because of her case and information. I was able to get diagnosed but it must be because I might have some Spanish or European Blood, That's usually where it comes from. I got diagnosed with Still's disease around 2010.
Now let's talk about my diseases that I have. First they are NO LONGER On the Rare Disease List. I just found this out recently. It's good news. Because I also have systemic lupus erythematosus, it use to be rare but it's becoming very common. I think they had to remove it and the same for Fibromyalgia. As a Child I had amplified musculoskeletal pain syndrome or AMPS.
I can't seem to find it on any list, It was rare but again,l can't find it and irritable bowel syndrome or IBS; Sjogren's syndrome is still up in the air. It's just crazy to think all these disease are now common. If they are on the list, PLEASE Correct me. I looked for hours,I couldn't find them. In a way, I am glad I have common diseases so now Doctors know more how to treat them. But there is another concern. And that is that I hope people aren't getting misdiagnosed. But then that's why we have such terrific doctors.  I am grateful that my Doctor looks and checks everything out and Makes sure my levels are doing okay.
I am Very Happy to be celebrating this Wonderful day with Dear friends and my family.
My Friends who are all Fighting Their Illnesses,Sarah,Alana,Kaitlin,Tiffany,Lisa,Maple, Eman,Who is so Funny! we don't talk a lot but she makes me laugh & ALL My friends who fight likfe Crazt and NEVER Give Up!!
Lastly someone Who made me go out and Live my Life, she's always behind me, I wanted to give up but her words stayed with me, Thank You my Angel, My Dear Friend, Laura Who Passed but Changed My Life Who taught me Still's Disease is not a death Sentence. she Told me once, If You have a Chance at Life take it. Still's Took her life but Her Memory Lives with me everyday.

                                                              Thank you for Reading!

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Thank You Commenting! & I always read them.
Xx Pam