my personal acount about living with a "rare disease" called Parry Romberg Syndrome a autoimmune disease that affects about 700 people in the USA.
I hope my blog will shed some light and offer hope to those like myself.
There are over 7000 known rare diseases. My blog is dedicated to those whose lives have been shattered by any rare disease.
There is no cure for Parry Romberg Syndrome.
I never even knew what mystery illness I had when I gave birth to nikki in 1998. Parry Romberg Syndrome officially became a rare disease in 2001. I was shocked to read about this , the possible link to this autoimmune illness is very scary. There is still no genetic testing either for most rare diseases. Gynocologists need to be educated about these possible links so their patients can make educated pro-active decisions when it comes to family planning.
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I never even knew what mystery illness I had when I gave birth to nikki in 1998.
Parry Romberg Syndrome officially became a rare disease in 2001.
I was shocked to read about this , the possible link to this autoimmune illness is very scary.
There is still no genetic testing either for most rare diseases.
Gynocologists need to be educated about these possible links so their patients can make educated pro-active decisions when it comes to family planning.
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