Vasculitis UK
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Is it hereditary? Is there a link do you think?

I have a question going around and around my head so I thought I'd ask.....

When my mum was young she had urticaria, she grew out of it within a short time, but in her 60's she was diagnosed with fibromyalgia. Her younger sister has lupus (sle).

In my 30's I had urticaria, just a short bout, cause unknown but believed to be a reaction to some medication, I'm now 48 and have been diagnosed with vasculitis (GPA?).

My son is a teenager and he has been diagnosed wiith urticaria, he gets the rash when in contact with water - rain, tap, any water, he can drink it but washing, showering etc, where it contacts the skin, brings out the rash. We were told he would do as my mum and I did and grow out of it within a couple of years - four years on and although a bit improved nothing has really changed.

I am curious and wondered what other members think - is there a link or is it just coincidence that we have had/got these illnesses?

9 Replies

This is what the Johns Hopkins autoimmune research centre says:

"Q: Are autoimmune diseases inherited?

A: Clinical and epidemiologic evidence as well as data from experimental animals demonstrate that a tendency to develop autoimmune disease is inherited. This tendency may be large or small depending on the disease but, in general, close relatives are more likely to develop the same or a related autoimmune disease. A number or genes have been implicated in causing autoimmune disease, primarily genes related to the human major histocompatibility complex called HLA.

Q: If autoimmune diseases are not primarily inherited, what causes them?

A: It seems likely that environmental factors acting with the genetic predisposition of the patient are responsible for triggering autoimmune disease. A few such triggers have been identified, including a number of drugs that are associated with some forms of lupus, thrombocytopenia, hemolytic anemia and other autoimmune disorders. Infections can be followed by an autoimmune disease in a few instances such as rheumatic fever followed by a streptococcal infection and Guillain-Barre` syndrome caused by chlamydia. A great deal of circumstantial evidence suggests that viruses may play a role in initiating some autoimmune diseases. A number of nutrients have been studied including iodine which contribute to the onset of autoimmune thyroid disease. In most cases, however, we do not have clear evidence of a particular environmental trigger of autoimmune disease."

For those who may not have heard of them, Johns Hopkins is a big group of medical institutions, similar to the Mayo Clinic.

What does seem to be the case is that a family will have a genetic tendency to have immune system problems - but in fact they may not always be the same, some people develop one "presentation", others something a bit different and some may never have any bother at all, and that is possibly due to the lack of the trigger having an effect on their immune system. If they can identify the genes that are associated with a particular autoimmune disease it will make it possible to start to look for better treatments and even cures.

So yes, it is more than just coincidence when granny, daughter and child all have something - there's a genetic bit and since they may often live close there is a greater chance of meeting an environmental trigger if one is involved.


Thank you so much for this very interesting information.

Very much appreciated,




My daughter is tested every 6 months because she has Urticaria. I have been told yes its hereditary and no is not????? I have a severe form of HUVs. There is no history of anything like this in my family. The general rule of thought is that i picked it up through a blood transfusion before my daughter was born but after my son. He is fine and not tested. The latest odds for Annie-Mae is 50-100% Of inheriting the condition. She has a very good relationship with the hospital staff and is very knowledgable about it. The average age for HUVs to appear is 43.

Its difficult to get a clear answer and even harder to get your head around

Good luck


There is research being discussed and planned at the moment at Addenbrooke's in Cambridge, here in the UK, regarding looking into a hereditary link with patients with ANCA Associated Vasculitis. Earlier this year VUK posted asking for volunteers to take part in this research and the response was excellent.

We know of sisters who have WG,(GPA) who were diagnosed 9 years apart. Also very young sisters, diagnosed 5 years apart.

Mum and son who have two completely different types of Vasculitis,

mum and daughter also.

We know of cousins who have WG. Quite a few people with Vasculitis have grand-parents or parents with RA or Fibromyalgia. .

There is also a theory that some families do have a history of "auto immune" diseases. We know of a brother and sister ,one has MS the other WG. Sisters, one has Lupus the other WG.

But on the other hand we know of identical twins born 10 mins apart, one has WG the other does not. We also know of man and wife with WG (GPA).

There is other research taking place in the North of England looking at clusters of genes of people with Vasculitis. So research is happening here in the UK.

The theory is "it is a combination of a genetic pre-disposition, with an environmental trigger".

Research has moved on in leaps and bounds this last 13 years since my husband was diagnosed with GPA (WG). Even this last 3 years research into better kinder treatment has improved.

With the new Vasculitis UK Registry, started this year by UKIVAS, more information about individual cases will be collected and analysed. This will then help and support research projects for the future. Vasculitis is much more common than people think it is, the UK registry will give the medical profession a much more accurate record of numbers in the UK over the next 5 years..

We attended a Vasculitis Masterclass in Warrington a few weeks ago, and I was amazed that there are 320 recorded cases of Takayasu Arteritis in the UK and it is believed this number is much higher. Most doctors at the Masterclass thought this number much lower.

We also find that the number of patients with WG (GPA) is probably higher than is thought, as some people we know diagnosed with WG, who have been diagnosed early and are treated appropriately can go onto live reasonably normal lives and do not find they want any extra support or help.


There is no evidence from any of the studies carried out to date that the diseases are fundamentally hereditary but it's almost certain there is a genetic predisposition. As I recall, the studies have shown there appears to show very small risk that the condition can be passed on but these numbers are not statistically significant. There are examples of parents and children being affected but again, statistically this may well prove to be statisctiaclly no different to unrelated partners, i.e. down to random chance.

I suspect the genetic propensity may well be more common than currently realised in which case, people exposed to the same suspected environmental triggers may well appear to show a relationship between apparently related individuals. However, I do believe it's likely the family propensity may well be a reality and geographic clustering appears evident as with the disease prevalence further away from the equator. 'Why' is another question!

Personally, I believe the causes and triggers of many of illnesses are due to a combination of emotional and physical states and that we need to take a much more holistic view when it comes to health. I'm a firm believer that epigenetics will reveal more and more of this kind of reasoning and if you want to be blown away then please watch this BBC science documentary first shown in 2007.

Healthy wishes.


I sometimes think that patients KNOW well before doctors find these things out through studies and so on.

I don't mean to digress but I am not "convinced" by the claim that if you have multiple autoimmune conditions, you are affected less or affected mildly.

Autoimmune condition has a huge familial influence (genetic). We may not have the exact condition with your siblings/parents - but biologically the "gun is loaded". As you are exposed to external trigger(s) long enough as you grow older, you develop the disease if not exactly the same one. That's just my interpretation.


This is an excellent post on Health Unlocked, because I am convinced of 2 things: (1) that Vasculitis is more common than we think and (2) that Vasculitis has a hereditary link

Although I am not medically trained, I am a professionally qualified engineer and have 30+ years experience in fault diagnosis & symptomatic analysis, and know of several people with Cerebral & CNS Vasculitis, even though it is only supposed to affect 1 in a million. This should not be mathematically possible. Also, my son was diagnosed with Kawasaki Disease as a baby (thankfully cured very promptly) which is only supposed to affect 1 in 25,000 people.

Therefore, I am convinced that (1) Vasculitis is still rare, but not extremely rare. (2) Also, I am convinced that the hereditary family tree plays a big part in these rare conditions.

I would love to hear anyone's comments and also take part in on-going research.


The general consensus is that some people are genetically predisposed to getting an auto-immune disease, but it is not one gene, it needs a cluster of genes to come together in one individual ie it is not automatically passed on, unlike certain other diseases, like haemophilia. There is also the need for an "environmental" trigger to set it off and different triggers will cause a different response ie a different A-I disease (of which there are many).

So, the answer is very complex. There are certain types of urticaria which are more than just a skin disease, so if it is persisting he should probably be tested for these if he has not already been.



Thanks for the reply John. Our son had a special scan at JR and everything looked fine, He doesn't suffer from hives or rashes, but thank you for pointing this out. It is always good to know what to look out for. Best Regards, Steve


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