Sunday, November 22, 2009

Who we are

Although about a family, I'll be the only writing this blog. I am Rachela, one of three kids in this family. I am 17 and diagnosed with pervasive developmental delay- not otherwise specified, or PDD-NOS, an autism spectrum disorder. But is that who I am? Maybe those are my thoughts.. how do you define who anyone is, anyway? So I'll stick with the basics.

Mom has a kidney disease called FSGS, or focal segmental glomerulosclerosis. I still can't pronounce it. It is an autoimmune disease that attacks the filters of the kidney, or glomeruli. About 20,000 people in the US are in end stage renal disease, or kidney failure, because of FSGS. Tens of thousands more are living with it. Every year 5,400 people are diagnosed with FSGS. It has no FDA approved treatments or cure. Most patients are treated with steroids. I think that most, if not all, patients with FSGS will reach ESRD. Mom has been diagnosed with it for over seven years now. In October 2009 she had her first kidney transplant, donated from my dad, but the new kidney already is affected by FSGS. She teaches special education.

Dad has Asperger's Syndrome, a high functioning form of autism, and sleep apnea. He works in a grocery.

K is my older sister. She has attention deficit hyperactivity disorder, or ADHD. She is 20 and is in college as a chemistry major.

T is my younger brother. He also has PDD-NOS. He is 5 and attends kindergarten in a special education classroom.

That is our family, three of us with ASD, one with ADHD, and one neurotypical but not typical in all senses. All of us have alphabet disorders, hence the name of this blog. The other posts will be more interesting, once we get past all of the introductions.

2 comments:

  1. Welcome to the blogosphere! I like the idea of the 'alphabet disorders' (well, 'like'...no, but the concept of having to know the acronyms and living in a world where there is an 'inner circle' who recognizes these random acronyms as something significant is profound).

    It's a hard world to deal with, and I always get angry at the phrase "that which does not kill us makes us stonger". Sorry but that which does not kill us makes us slower and easier to kill. So, don't think of in terms of things 'sucking the life out of you'. Try and think of them as strengthening your coping muscles...

    Good luck, Bill

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  2. hey cant wait to read more about you and your amazing fam rachela! i only blog about my psycho cat now, but hope one day to blog about me again hehe, i second bills words, good luck heheh!

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