Anyone out there think behcets is hereditary..

[dawnie2750]

I know that all info points away from behcets being hereditary, but I would like some opinions from all of you on here please...

Seemingly behcets gets better...or manageable as you get older...again any opinion would be fab...

[devonshiredumpling]

Now I've read the other thread I know why you are asking this Dawn and I think the truth of the matter is that nobody knows.

For what it's worth, I don't believe it is hereditary but I think it might be familial - do you understand the distinction I'm making here?

Just in case you don't (I so hope this doesn't come across as patronising cos it's not meant to be), I'll explain what I mean.

Hereditary suggests that something is actually passed down the generations from parents to children/grandchildren via a gene or set of genes. So, if your wee man had hereditary Behcets, that would mean that in the set of genes you gave him at conception was the one or more that is responsible for Behcets.

Familial suggests that there may be a combination of genetic and non-genetic, for instance, environmental, factors that are responsible for your wee man to have it.

This is the only way I can explain those people on here who have siblings with the disease. Now, if the cause is not genetic, that would suggest to me that what causes the disease can be manipulated to reduce or eliminate it.

Does that make sense - I mean, have I explained my understanding of it to you?

[Jazzy21]

Yes in my family it is related but as in the fact most of us have arthritis or autoimmune diseases also. Genetics in my opinion does play a part.

[andreafm]

My mother, aunt, uncle, grandmother all have suffered with certain symptoms of Behcets [mainly ulcers and arthralgia] but I am the only one that has been diagnosed with it and has neurological symptoms as far as I know.

I am the most disabled person in this line up although my uncle has been pretty disabled since early on in life. I think they possibly weren't diagnosed due to them being much older than me and Behcets not being easily diagnosed in them days. Also some of my family have been non-doctor goers in the past which makes it difficult to get a true family medical history.

Similar to what Di says, I think we possibly could have a genetic/familial disposition to Behcets, but it doesn't mean we will all get it and get it the same. It is rather like a complicated recipe where all the componants have to be exactly right at the right time [or wrong depending on how you look at it].

Hmmmmm it's hard to put into words but I think that might say what I think

As I understand it the researchers are still looking into new genetic links, but can't find the link I was reading recently, perhaps someone else can help.

Andrea

[lesleyg]

You learn something every day - I didn't know that's what familial meant. Two of my brothers have sarcoidosis which is also an autoimmune disease and all three of us worked in laboratories and at one time or other breathed in fumes, which has got one doctor wondering if that was the 'trigger'.

Lesley

[devonshiredumpling in reply to lesleyg]

Now, isn't that interesting, Les?

It rings bells with me too. Although I haven't worked with chemicals per se, I have played (not in an irresponsible way, honest, guv)for most of my adult life. Wood sealers, polishes and all sorts of wood-turning goodies; tropical hardwoods, turned and sanded to within an inch of its life; metal polishes, patina-producing chemicals, and a whole shed-load of polishing waxes; hot acids used to clean solder joints. The list is endless.

[andreafm in reply to devonshiredumpling]

Just to add I worked in the print industry for most of my working life and used all sorts chemicals for spray mounting, developing films, ink, glues....not sniffing glues though

[devonshiredumpling in reply to andreafm]

Ooooh - do you think we might have something here? How exciting

[bailey23]

Hi

My mum has a rare auto immune disease but not Behcets and she is on almost the same drugs as me. I wrote to the Genetics Department in Birmingham Hospital who are supposed to be experts in Genetics and I was told there is no corelation between the two. But I still think that there is something that I have been passed down as I suffer from everything my mum does even down to the same dodgy knee! I only have to look at my mum to know what the future holds!! Surely this isnt pure coincidence!

Hugs

Angela

x

[tamirra]

Hi, although my husband is a Greek Cypriot and we have been told that he passed on the Behcets to our daughter, she worked in a car body shop where cars where being paint sprayed without wearing masks, could this have been a trigger, or am i barking up the wrong tree?? x

[andreafm]

Digressing but sort of relevant is when I gave birth to my son I had an abundance of milk which I donated some to the prem Unit. Within a week I had a second bought of Chicken Pox and telephoned the hospital to warn them that I had chicken pox. I was also concerned that I would pass it onto my son.

They poo hooed my concerns about the prem babies and also said that because he was being breast fed he would be immune from Chicken Pox......This didn't make sense to me because if I wasn't immune to chicken pox, how could he be?

They still didn't take any notice and though and behold, my son at 2 weeks old ended up very ill and absolutely covered in chicken pox....

Obviously, my immune system then wasn't working properly as it is unusual to have 2 lots of chicken pox anyway. I think if our immune systems are not right, then it is more than plausable that we may pass this onto our children....ironicly I have since also had 3 boughts of shingles...all very similar to behcets.

Another example is when I lost my baby some years ago, I had been ill with what was thought to be a virus [possibly more like behcets disease - undiagnosed]. It was stated that my immune system attacked my body and saw the fetus as alien - thus a miscarriage.

Not sure it says anything in terms of genetics as such but thought it was an interesting point of how the immune system works and how medical system sees the immune system. To me if the immune system goes wrong, it goes wrong in a number of ways.

Some which can be diagnosed because the research has been good and found the connection and this produced the right tests to prove it and others like us that don't fit into the standard auto-immune disorders......I personally think the list of possible auto-immune disorders is endless and the medical system doesn't have the complete answers as to why it goes wrong.

Hopefully, this will change in time.

Andrea

[devonshiredumpling]

Andrea, my varicella zoster score:

Chicken pox: 3 times

Shingles: 3 times

[Hidden]

What an interesting discussion. I was going to wade in with my family history but it's pretty similar to those above.

In answer to your question about BD getting better or more manageable as you get older - Many sufferers lead normal lives. Some have very long periods of remission, some become symptom free or have fewer and less severe symptoms. Management, lifestyle and medication can all help.

[andreafm in reply to Hidden]

Hi tigerfeet

I know this doesn't sound very positive but I have got to say that my symptoms haven't got better as time has gone on. I haven't had remission at all and it has had a progressive nature if anything. I know this might be a bit unusual but I suppose this could be because I was left for so long without diagnosis and/or any treatment.

That's why I am so glad now that things are improving with diagnosis and management. Also having this forum and the centres of excellance means other people don't have to be left so long without undiagnosed and treatment.

Early diagnosis and treatment must be the way to go I think...along with more research. The question of is it an auto-immune disorder or a genetic disorder or both must eventually be answered......I hope

[lizzykarma]

hmmmm.... well i personally think it could be hereditary or familial.

myself (27)- severe fatigue and pain. Full body arthritis. hypermobility of hips. severe gastritis and IBD. Migraines with aura. i have had retinal vasculitis. Mouth ulcers. throat ulcers. genital ulcers. acne/boils all over since 2012. rashes. erythema noduseum. follucitis- even vaginal follucitis (didnt know you could!) My jaw locks and seizes due to the arthritis in it. dont know if iv forgotten anything i prob have tbh! as that is life lol.

I have it, my daughter aged 9 has been diagnosed with BD. mentioned on another thread her symptoms... sometimes joint pain.ulcers above and below. ibs/d. anaemia. hypermobility of knees.

My youngest son is showing symptoms also and is only 2.

My brother (21) gets monthly ulcers to degree where he cant eat. monthly periods of fever, where he is in bed for about 3 days, gets ulcers on his scalp- actual ulcers. psoriosis there too. he wont discuss his never regions. wont get checked out.

My mum has the boils on her skin. knee problems, pain issues. and used to get ulcers in her mouth very reg, she gets monthly genital ulcers/boils she is unsure- however my mother is one of them who if you have it shes had it or got it etc so its hard to tell. but iv physically seen boils on skin and her knee is having an operation on it in a few weeks times. an MRI scan also showed compression. so i dont know if she has behcets or something totally unrelated! been ref to an immunologist by her dr.

My Maternal Grandfather is diagnosed with Ankolysing Spondylitis. with varying symptoms such as arthritis, reg cellulitis. he is very dark skinned. doesnt look English looks more like a turkish/greek skin tone and so do his earlier relatives. his wife is Prussian (my grandmother maternal).

My maternal cousin, ceara is 21 also, she has arthritis in wrists and elbows. monthly ulcersations in her mouth where she cannot eat. Psoriosis/eczema. IBS. Severe Migraine. Her jaw cracks/clicks exactly like mine and causes problems when eating. she looks very similar to me and my daughter in many ways- pale, anaemic etc etc. also has hypermobility in elbows. currently being checked for Behcets and AS

My maternal cousin martin 32yrs old- reg mouth ulcers, psoriosis on head. jaw plays up like mine-w as offered surg when younger but turned it down.

My Maternal cousin laura- 19. Hypermobility in her spine. arthritis in ankles. psoriosis. severe acne- huge boils... she lives in austrailia though so i dont know too much about her only what has come up in conversations.

My maternal second cousins (twins) isla and orla have been diagnosed with IBD and AS just starting- no spinal fusion however they have arthritis in whole body, the IBD, they get reg mouth ulcers also. their jaws are effected.

My maternal second cousin Thelma 60 odd- severe AS- full spinal fusion, head held up with a brace. full body arthralgia. huge skin lesions. dont know much else as they wont discuss it tbh.

and then....

My Paternal Grandmother is undiagnosed Behcets. but at exactly the same age I am, became disabled practically over night like myself. Shes had thrombosis. Heart problems. Liver and kidney failure for no reason at all. she does have joint problems. she has huge ulcerations on her legs that they acnnot get rid of... shes had them since she was 29/30 and they get rebandaged every 2-3 days. they are massive. she has huge purple lumps on her legs- noduseum i think but they havent been diagnosed. she now has a pace maker. she is on pain meds but that is it. her vision is reg effected and so on but she is getting old now. I personally feel that it is likely behcets and has been untreated for so long, she has recognised the similarities but doesnt want to get checked also severe fatigue, however on mums side of the family there are huge links.

therefore I dont know what to think tbh.

My family is very widesprad locality wise. my nan has never worked so cant be fume related in that respect. Iv done spray tanning at one point but apart from that iv not ben exposed to anything nor have my children or other relatives.

There are a lot of similarities tbh and a lot pointing towards behcets in many of my relations also.

Anyway enough of the ramblings I seriously think it has a family/genetic link.

There are a few on the forums who say their children are showing symptoms or have been diagnosed.

iv met a lady at the opthalmology clinic in the royal hosp who said all her siblings and her mother had been diagnosed and where all under the prof.

so after my huge speel i shall love you and leave you xx

[lizzykarma]

Andrea i had hit and miss symptoms through childhood....

since June last year I havent been in remission once!

xx

[andreafm in reply to lizzykarma]

Thanks lizzy

Wow that's incredible how many of your family having similar symptoms this cannot be co-incidence can it?

I too have dark skin and look greek or turkish and because of my name Andrea a lot of people think I am, but I am English as far as I know but my Father's had virtually black hair and dark skin. His family background is very wooly though so who know's.

Pretty much the same in terms of it starting with hit and miss symptoms in childhood but since weakness started around 1990's it has just gradually got worse. Not so much the ulcers etc but more the neuro symptoms that are unrelenting so far and really progressed around 2006. But as I said before I wasn't actually treated at all [appart from a short course of Thalidomide in 2000 which had to be stopped] in all those years until around 2008/9. Obviously this has had an affect

Andrea

[Charms1]

WoW ladies, it is amazing the similarities of things that some folks do have from family history.... myself, i was adopted so i do not know my biological history... i do have a tid bit of info in that i heard my biological mother lost sight in one eye for an unknown reason; apparently they do not do much doctoring.....

[lizzykarma]

Awe charms its always diff when you devekop an auto immune disease snd dont have your parents and grsndparents to curse at ( light humour). I cnt relate in all honesty to how you must feel.

Andrea our family is a good mixture either dark hair brown eyes and olive skin, or dark hair blue eyes n pale in winter but tan really well ( me) or fair haired n blond.

Prussian blood we cnt place so either Iran/polish as they moved tbh. The timing looks more iran tbh, byt later in the fam tree polish is introduced to the mix. Also Italian on dads side

x

[dawnie2750]

omg....what the heck have I started....

Di thankyou,,,,totally get the whole similar thing and understand a wee bitty better!!!

My dad has always had bad heads and pretty bad mouth ulcers..and the usual unhealthy heart disease (triple just after he was 50) diabetic etc

My mum is arthritis and pretty bad...weakened joints namely her shoulders which keep dislocating and she has a new knee just recently and she is 60 this year...her sister the same and so on...

As for the chemical thing...I cant really think of owt...except spray paint at work/college and cleaning stuff when I cleaned at the hospital...but I am sure Iv had BD since I was a child..diagnosed around 4 years ago..and the most common way which as Iv had a wee look through...seems to be miss diagnoses of herpes...

I love hearing every one of all your stories...thankyou so mucho for sharing!!!!

Izzy...I too have hypermobility..which I call bendy-itus!!!!!!

I am very interested in the whole family thing and how people connect...My father was in the merchant navy and so traveled the world...My partners father was hungarian but thats as foreign as I get!!!!

Andrea...bless you that must have been such an awful experience...Nothing at all comes remotely close for me..the worst I got was about 5 years ago, I was so ill..nothing they gave me worked..I have no memory of the four days I spent in hospital, but I know it scared the shit out of my family..

Think I shall blog more often.....

big love and hugs to you all dawnie xxxxxxxx

[nicolakate]

Just to add I understand their is a gene that is linked to BD (HLA-B51 I believe). I was tested for it some years ago and negative. Told if you have it makes diagnosis more likely but if you don't then could still have it. Maybe that is what your family has Izzy? Would be interesting to be tested.

In my own family they were interested as we have a history of vasculitis (including in the brain) and thyroid problems (which I believe are also auto-immune). I have Neuro-BD and obviously this is a form of vasculitis in the CNS as I think BD is throughout the body.

Nicola

[pixie_14]

Hmm, interesting; I began working as an embalmer in 1979; badly ventilated workplace; formaldehyde fumes... Into the NHS in 1980, again mixing formalin with no fume cabinet/extraction; it's a known carcinogen, but as for an autoimmune connection, I don't know; I'm such a newbie, never even heard of Behcet's til last friday when the b*****d literally bit me in the nether regions!! familially; my 24 y/o daughter has scleroderma, dignosed about 14 yrs ago... another autoimmune condition. Reading other people's stories, I can't help thinking how comparatively fortunate I've been; GP & practice nurse both came up with Behcet's after initially thinking it was genital herpes (which was totally impossible!!) They began me on trx for herpes, but on receipt of blood results, GP was at my door saying; 'we need you in hospital' - apparently my inflammatory markers were through the roof!!!! Currently still in hospital, happily now at least able to sit (thank goodness for catheters and instillagel!!!) wonderring what the future holds.....

[ladybug81]

not sure my mom is middle eastern and my dad is american. My rhuemy jumped all over that like aha! My mom and aunts all have arthritis? my mom does get little leg sores once in a blue moon but ther are more like lil bug bites. I first had symptoms when I lived in a crappy apt in my college years which had a Major Black mold problem? so I dont know

[MrsB1]

Familial if not hereditary for sure. My mum, my niece and I have been diagnosed with behcets. My auntie is undiagnosed but for sure has it.