The Lupus Forum banner
1 - 6 of 6 Posts

·
Registered
Joined
·
257 Posts
Discussion Starter · #1 ·
Until today, I was 99.9% sure that I have Lupus. My 9 year old daughter even shows early signs--seizures, facial flushing, fatigue (all come and go like flares). One thing bugged me though--no one in my family has ever had an autoimmune disease.

Well, today I confided in my grandmother that I have been sick. I tried to be vague as I have decided not to tell my family (an unsympathic bunch). I just said aches and pains--going to see a rheumie. Well, she jumped all over it! Apparently, my mother's sister was dx'd with fibro many years ago. Due to the fact that my aunt quit talking to me 15 years ago over something delusional on her part, I never knew! My grandmother said that I've always been more of my aunt's daughter (geneticly) than her own daughter. This I always knew before she wrote me off.

Also, my GM said that Lupus ran in my GF's side. So good news and bad. It gives me the conviction to stand up to any doctor who blows me off again. ANA was 1:640 specked, I have or have had enough criteria for a dx, but FP blew me off. WV is considered a "medically underserved state" and the doctors we do have suck (if they're not downright dangerous.) I made an appt with a rheumie in VA. Before I leave another doctor's office unheard, I am going to stand up for myself and say, "I am not comfortable leaving here without a treatment plan."

Bad news: I am 100% sure that I have Lupus. Now I have to come to terms with it. I'm really sick now too with the worst flare I've ever had, so it really isn't a good time to wrap my head around all of this. :(

1tiredmama
 

·
Registered
Joined
·
1,999 Posts
Welcome to lupus. In my family, lupus is genetic too. It came from my dad's father's side, and I have had one first cousin with sle, and another who has 3 if the 11, not a full blown 4 of 11 yet. It can be a relief to have a "link", but sad too. We fall in the minority group which has genetic sle. It seems that with the progress in medicine, it is becoming easier to track down those lost links.

Good luck to you and your family.
Sally
 

·
Registered
Joined
·
4,444 Posts
I'm the first in my family to have a diagnosed autoimmune disease. It's not that uncommon for there to be very little to no prior family history of lupus or another autoimmune disease either.

It's kinda like breast cancer... we all know family history is a risk factor and they talk about the genetic tests on the BRCA genes... but yet I think 70-80% of breast cancer patients have no prior family history of it.
 

·
Registered
Joined
·
1,835 Posts
I too am the first....I am also the first to have Ovarian Cancer, although breat cancer runs on my mothers side.

Stephanie
 
1 - 6 of 6 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top