Another Gaucher mutant sister from one of my groups asked what age we were all diagnosed and how Gaucher's has affected us mentally. She has been struggling with the disease for a very long time, as well as other family issues. I shared my story with her in hopes that she could see that even though we live with this thunderstorm cloud over our head, life is still worth living. Here's my back story.

I was diagnosed at either age 5 or 6 (I'm 32 now). While at the NIH for testing, they diagnosed me as an asymptomatic carrier of Hemophilia A. I wasn't able to get the biopsies done that were needed for Gaucher's for fear I'd bleed to death. From the horror stories I've heard, sounds like I dodged a bullet there. I then had to do other stupid tests, where they purposely cut my forearm to see how long it took me to stop bleeding. How awesome is that for a 6 year old? I'm not sure if Gaucher's is where my depression comes from, since I was bullied non-stop from kindergarten to 8th grade, and had many other traumatic events. When I'm having issues with the disease, such as not able to access my port on the first, second, third, or fourth try, or I'm experiencing a lot of pain, then I get really depressed. I'm on medication for it, and it really helps. I was seeing a psychiatrist monthly to manage the depression medication, but now that I'm stable, I only have to go every few months. I was never allowed to play sports, or participate in Gym activities growing up. It was hard and devastating. I had to be careful with everything I did. I hated life, hated the disease, and hated that I was different. Now that my depression is managed, and not with the traditional depression medication (I'm on a drug commonly used for epilepsy, though I don't have it), I feel 100 times better. I've also surrounded myself with people who are accepting and supportive of my illness, and kicked those other a-holes to the curb ;)

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