Lupus Support Group

I know I've been posting a lot, but this is AMAZING!

So, I've been Dx with Lupus recently, but my mother has suffered 30+ years without a Dx. She has blisters, ulcers, skin rashes, fatigue, lung issues, etc. I swear, if you name it, she's got it (except Kidney issues). Long story short: Due to her inability to get a Dx, she is without health care and in a pretty bad way. She's forced to be dependent on others because with a Dx, she is unable to receive Social Security.

She's trying to remain positive and is truly happy for me, but until we find a way to get her seen by a Rhuematologist, she has to find ways to stay positive. One of those ways is Geneology.

Our family is riddled with, what I think, is Lupus symptoms that I have no way of proving. My grandmother had to have her Thyroid removed among other things, one uncle died of enlarged heart and one uncle died as a child from "unexplained welts" that they say was probably an allergic reaction.

She has taken her time over the years and combed through geneoplogy website after website but due to the cost, could only get so far. She recently went back to the church of latter day saints website, (they've improved their site dramatically over the past few years) and may have found the missing link:

Her Grandfather died of Cardiovascular issues and Nephritis in his younger 40's! I've been using a lot of my nursing school knowledge to really research this Lupus, so when I explained to her that there is a type of Lupus called Lupus Nephritis and that Cardiovascular issues are very common in SLE, her mouth dropped. She said that she knew this info was the missing key, but she just didn't know what it meant.

I told her that this shows that there is a family history of this, before her and now after her(me). These doctors need to stop playing and diagnose my mother!!

I'm sorry, but I had to vent to someone who could understand what I'm saying and the impact this could have on our lives.

Anyway, have a good weekend and stay well!

Wow, amazing how she found it went all the way back. I was recently awarded my SSD and I don't have organ involvement. Thing is, I went through a non profit, Allsup: www.allsup.com you should totally check them out. They were great with me and helped so much. And they are a non profit, so they are really on your side, not out to get your money! Just an idea.

You are welcome to vent here anytime about anything. You are also more than welcome to PM me anytime. We are all here for you

Take Care,

Amy

I agree I think many autoimmune problems ( and others) are genetically related. My aunt and sister had multiple autoimmune problems and so do I. My father told me my aunt died from lung cancer but my cousins tell me their mom died from Scleroderma related lung involvement. My sister died from a heart attack but it was also related to Scleroderma, her heart doc told her this disease had gotten to her heart and one lung after she had her first heart attack. She only lived to be 53. We both had/have Dx Sjogren's, Dx Raynauds, Celiac Disease, Dx Migraines,Lupus and Fibro symptoms. My sister was Dx with Scleroderma/CREST in 2004.

My father also had Scleroderma but with very little health issues. I figured this out after he died and my sis died and I realized I was sick too. His fingers had the tell tale signs and his doc's just said he had arthritis even the they were pointed and white on the tips. He didn't get really sick till he was in his 90s. that may be because he is a male. I think hormones and genetics play a huge role in autoimmune disease also.