Vasculitis UK
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I found out yesterday it runs in my family Dad side !


Im not new but just found out yesterday that my auntie has eye vasculitis. My uncle had something and went blind( mum dosent no what but he was a heavey drinker)

My dad passed away from stroke but was very ill b4 hand for yrs . Sinus b/p all his back bone fused toghter and he couldent turn his head.

Now im thinking could it all be in the genes? This is all on my dad side also my garndad died in the shower heart attck ir stroke at 60ish. dad side again.

Im freaking out because im going the same way .

my eye sight has gotten worse over the last yr. i also went 6 months ago for new glasses and she said it had deteriated in the last 6 months so now im due to go again and i no they have gotten worse.!!

My sinus are killing all the time My ankle and foot left side swell for no apparent reason .

I have a rash going down my arms had the one on my chest and face for ever.

Had a mri came back white matter and had a xray on my chest and it showed a shadow have to go back 18th april for another one.

i had a infection in my water works to many white cells and took forever to clear up .

im really tired once again and very short tempered i just hate ppl coming over as i dont want to make conversation with them.

last night i had a row with my daughter who told me i was every one has to pussy foot around me ( which is very untrue ) i try my best to look after the grandkids and be there for all my children ( she was in pain with her tooth )

But i was devastated at what she had said Today she siad she dident mean any of what she had said but the words have stuck in my head like a hammer blow.

I never new she felt that way she was always my support !

cant think my life is worth all this crap and pain x

5 Replies

You really sound down.

I think the closer you are the more thoughtless remarks can hurt. I think your daughter would be most upset if she knew how much she hurt you.

Have you shown her the vasculitisuk web site so she may get some idea how you feel or have you tried to shield her. I know I do not tell my kids everything (even though they are grown up)

Regarding the gene thingy.

I am very interested in this as I think our family have a faulty one.My daughter has ME and my brother has something which causes his skin to fall off and has been told it is an autoimmune disease. That is all I know about him as he wont talk about it!

Anyway even if it is a gene thing we are in a much better position than our parents were what with all the research and drugs there are nowadays.

I hope you feel a bit better soon.


I, too, felt your frustration and pain, Nanny Alli. You sound to be going through it in a lot of areas.

We don't tend to let people know how badly are feeling, preferring to carry on as best we can so that we can appear almost normal. Family and friends do not fully understand what we are going through. This illness can make us all pretty gruchy at times, especially when are feeling tired. Perhaps your daughter was having a bad day with her toothache which made her less tolerant than usual? You say she is normally a big support for you. Don't take her unkind words too literally, just give her a hug and move on, eh?

I am wondering whether you need to contact your primary specialist, the one who treats you for your vasculitis, and explain how you feel, as well as letting them have a list of your physical symptoms. It sounds like your symptoms are not under control and need further investigation and appropriate therapy. Can you make an urgent appointment? Do let him or her see how down you are feeling, this is important as depression can contribute to your illness.

Re the gene connection. Yes, I can see that it is likely that there is an inherited tendency. But whether there is or there isn't, you and the rest of us are stuck with the illness and we have to try to sort it out in our lives as best we can. Not always easy, especially when you can't see light at the end of the tunnel.

I am hoping that things seem a little calmer with you right now. I think we tend to 'blow off steam' when things are really frustrating us and we don't know which way to turn. That's as it should be, otherwise we might explode! Bottling things up is never a good idea.

Keep sharing - remember you are not alone in this. See what you can do to get really swift medical help. Don't just try to bear it.

Thinking of you.



Thk you

Its another day and still in so much pain...

I was awake most the night and up very early.

But on a good note My daughter came over had a good cry and said sorry


Alliosn x


So happy you have made it up with your daughter. Close family also can find it so difficult to understand and cope, believe me I know. Our extended family found it very difficult to come to terms with John and his WG, where as the younger family, living at home at the time, soon came to terms with it and grasped an understanding of it because they were living with John on a daily basis. They saw him when he was so ill and first diagnosed, saw his ups and downs, his relapse, were with him after his operations and also witnessed how many tablets he took every morning and evening. Tensions can run high either with close family or extended family sometimes counselling can help. But sitting round a table and having a good chat about it all can help too.

As for autoimmune diseases running in families well on the Vuk data base we do have a lady with WG who's brother has MS. We also have a lady who was diagnosed with WG in 2007 and her sister died in 2001 after battling with WG 6 years. Another lady has Vasculitis and her son has another very rare type of Vasculitis. BUT we have identical twins where one was diagnosed with WG 3 years ago and the other twin up to date is quite well. We also know of a lady who has WG and her mum had Rheumatoid Artiritis. There is a lot of research going on at the moment to study clusters of genes to see if there is a link in some families with autoimmune diseases.

If you are in pain and not happy I suggest you go and talk to your consultant and tell him/her exactly how you feel.

Just take care Susan


I was always told there was no genetic link. I honestly do not believe this is true. My maternal Aunt, long since passed away had 'saddle-nose' so maybe WG? My mother had an over-active thyroid, polyneuritis (not sure if that's an immune system issue) and Vitiligo which most definitely is. I developed Vitiligo when I was 17 and WG when about 31 (ish). Definitely dodgy genes!!


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