Auto Immune Family

[freakyschizogirl]

Hi all

As some of you will know I am the third generation in my family to have an auto immune condition - Granddad had Lupus, Mum has Rheumatoid Arthritis and I have Wegs. I can now exclusively reveal that my sister has joined the party and was recently diagnosed with Lupus with secondary Raynauds.

We all laughed about it initially as between myself and Mum we've seen and done it all in relations to doctors, meds and hospitals. There isn't much she will go through that we cant help her with.

It has always been on my mind that I could pass down the genes for auto immune disease to any children I have, i'd like to think that that's it now with my family but I don't think so some how.

[andrew]

Yup it's the gift that keeps on giving. My Dad and my sister both have auto immune issues.

[Debbie C]

Wow,I never thought of it being heredartary (sp ?) I am the only one in my immediate family that has it. I don't know about other relatives.

Sorry about your sisters ,Freaky and Andrew, as well as your Dad.

[chris.wg]

I am also the first in my family. But this is already something I had been thinking about. Its your immune system. One would tend to believe it has to some how be genetic.

[annekat]

I've always read that there could be a genetically passed down pre-disposition to autoimmune diseases. That makes sense to me more than to think actual specific diseases would be passed down genetically. But the inherited pre-disposition, something about the immune system, could make it more likely that an autoimmune disease could be triggered in a family member of someone who already had one, and possibly not the same one. That seems to be the scenario here. I myself am the only one in my immediate family with an AI disease, but I have an aunt with RA, and my siblings and my dad have had some sinus issues which I never had until I got WG, so who knows what might happen given a trigger at a susceptible moment.

[jvilner]

All my first cousins (11) have autoimmune problems. Mainly thyroid issues. My mom had issues and my dad had myastenia gravis. Now I have WG and my sister lupus. We got the whoppers!!

[freakyschizogirl]

My mum thinks she has an AI disease although she's only been diagnosed with RA. I think for now RA is enough for her to deal with as its pretty severe and even RTX didn't work for her.

Its good to hear we arnt the only awesome family out there collecting AI diseases. :thumbsup:

[annekat]

As I understand it, RA is an autoimmune disease, and can sometimes be very severe. It seems pretty common in the population and thus may be dismissed by people; they may think of it as "just arthritis" and not be aware of how severe and damaging it can be. And then there are those unlucky ones of us (not me, so far) who have more than one autoimmune disease.

[Debbie C]

I remember now that my mothers sister had RA. She had it so bad that she was crippled up from it. To be honest I never knew of that being an AI disease until this forum, I just thought it being worse than regular arthritis.

[rif]

My son is the one with Wegs, I have low thyroid and his father was diagnosed with Fabrys a few years ago. My mum and couple of her sisters also had low thyroid and my father had RA. Never thought about this before.

Rif

[chris.wg]

RA very much is a auto immune disease. That is why we all tend to see rheumatologists. Because they treat auto immune disease. I never realized this myself until I started seeing my old doctor. I like many associated them as the arthritis doctors. But that is because RA if I had to guess is probably the most common type of AI out there.

[freakyschizogirl]

As I understand it, RA is an autoimmune disease, and can sometimes be very severe. It seems pretty common in the population and thus may be dismissed by people; they may think of it as "just arthritis" and not be aware of how severe and damaging it can be. And then there are those unlucky ones of us (not me, so far) who have more than one autoimmune disease.

My mum definitely gets this. She is only 53 and yet people look at her odd like why has she got a walking stick and scooter? And think arthritis is just arthritis and not how severe it can be. Mum's being put on a new drug trail so hopefully the next drug is the one that works.

[annekat]

RA very much is a auto immune disease. That is why we all tend to see rheumatologists. Because they treat auto immune disease. I never realized this myself until I started seeing my old doctor. I like many associated them as the arthritis doctors. But that is because RA if I had to guess is probably the most common type of AI out there. That is why a lot of rheumies have a lot of experience treating RA and possibly none at all treating WG. It is not to minimize RA at all to say it is common; it would just be nice if they were equally prepared to treat all autoimmune diseases. But they can't be blamed for having little opportunity to get experience treating WG. Perhaps they should at least be taught more about it and the rarer AI diseases in medical school, at least to recognize the signs and be able to get it diagnosed and treated, if not by them, by someone more experienced.

[chris.wg]

I agree 100% Anne. Lucky for myself I have only ever had dealings with good rheumies. I mean even the first one was excellent for 2 years and when he realized he reached his limit in ability to help me didn't hesitate to refer me to a better facility. But honestly in rheumies's defense this can truly be said about all specialists or doctors in general. No excuse obviously but none the less true.

[godgirl]

My Mom had inclusion body myositis (sIBM) and polymyositis. My uncle (her brother) has Crohn's. There may be others... I'm attempting to get medical histories of my cousins on that side. My two younger sisters want to know, too. I'm the oldest and this hit at age 42. The next in line for us girls just turned 38 and she's pretty nervous.

Anne, you are right. Auto immunes don't tend to run alone. Even though I'm not officially diagnosed, my rheumy and ENT think I have Wegs and Cogan's. No biopsies yet - and they won't officially diagnose without a positive biopsy. But they are treating me as if I have them. Luckily, the treatments are the same...

Jen

[Geoff]

THis is a shock to me as all the evidence I have seen and the lectures I have attended make out that WG/Vasculitis is Not Heriditry.

Either way, if youve got it, youve got it. Perhaps its that given a set of Genes you are more predisposed to walking that particular road?

[annekat]

I think that's it, Geoff; it isn't hereditary because it isn't directly passed down through genes, but we can be genetically pre-disposed toward being susceptible to autoimmune diseases, whether Wegs or one of the others. The experts could explain it better, I'm sure.

[windchime]

Both my parents escaped any auto immune diseases, but with the luck of the draw, my sister and I both have them. Sjogren's for her and Fibrosing Mediastinitis for me. Lucky us.

[Kathy B]

My family is loaded with AI issues -- I have hypothyroidism as do 4 more of my 7 siblings (one hyper) plus mom, gma, uncle. One sister has peripheral nerve disease (disabled) and MS. And my 32-year old son was dx'd 3 years ago with ulcerative colitis. Growing up, there were 12 neighbors within a 4-block radius who were diagnosed with MS in varying forms/severity. Since we grew up a few miles (as the crow flies) from a chemical plant, we were convinced of the culprit. Years ago the Cleveland Clinic reviewed the cases and determined they weren't related to the plant. We still believe in the familial connection!

[mishb]

My mums sister and her son both have RA.

Apart from that, out of all my brothers and sisters and my parents, it is just me that has an AI
............but then I got greedy and took more than my fair share - RA, WG and MCTD