Is Lichen Sclerosis hereditary?

Posted , 16 users are following.

Today I telephoned my sister who lives in another part of the country and I don't see very often. Nothing unusal about that but the revelation that she also suffers with LS stunned me. She only disclosed this to me because I told her that I had recently been diagnosed with the condition. Thinking I was making her aware of a disorder she may not have known about I was gobsmacked when she told me she had suffered with LS for at least 6 yrs. Is it just a coincidence or can we be genetical disposed to LS ?

Has anyone else on this forum got a close relative with LS.

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  • Posted

    Hello Norma,  I have had LS for a long time...'way before it was diagnosed as such.  My mother had it and her mother had it!  I don't know any farther back than that...I tell my daughters to be on the look out for it just in case.  So far it has stopped with me and I hope it stays that way.  I mentioned this before on this forum, but I was wondering if ethnicity counts as well.  I know some diseases strike different races, and I wonder if this disease is as common among all races or are one or two more prone to it?  I was born in Ireland, so was my mother and her mother...at my next appt. I may ask my dr. if she has noticed any common denominators or if it is an equal opportunist to just anybody.   Just a thought........
    • Posted

      Patricia, a study of that sort would be very interesting.  I too am fair and of Irish deciet ...way back.  My mother had M.S. which is a much worse autoimmune disease, but I believe there may be a connection somehow since both are autoimmune diseases.
    • Posted

      Hello patricia, I think it is possible an ethical background could be connected. I also have Irish grandparents on one side of the family but a lot of us are from mixed heritage whether we have this disorder or not, so what are the odds! who can say. 

      LS is believed to be an immune malfunction and other immune disorders can be present with LS. My sister with LS has got eczema as I have also developed on one foot.

      Another sister 8 yrs. younger than myself has hypothyroidism which is common amongst LS sufferers ( will she be next,I wonder) 

      All of our autoimmune disorders arose around the menopausal phase.

      I feel hormonal inbalances are playing a strong part in disrupting our immune systems.

    • Posted

      hello...about the sort-of-shared ethnic backgrounds:  it is so true that in today's world there are fewer and fewer (it seems) people of only one or two ethnic backgrounds...so many people in the past couple of decades travel and immigrate that most countries are very diverse.  But a lot of us on this forum are older....60s  70s......and for our parents and grandparents there seemed to be less freedom to move around or mix with other ethnic groups.  Of course, WW2 sort of changed a lot of that, didn't it?  Anyway, I may be over-simplifying.   I just wondered if this was a "fair-skin, red hair"  sort of condition!  At least for a majority of us.  However, as someone already said, our parents and grandparents didn't talk about personal things....my mother also couldn't talk about "the facts of life", and didn't mention LS or any other problems of a personal nature, until she was probably in her late 60s or so.  (by then I pretty much already knew the facts of life cheesygrin)
    • Posted

      Oh how time changes attitudes patricia. It was so victorian and then along came the 60's( what a great time to be young).

      Ignorance is bliss until one has a problem. I am all for education and awareness. Anything to unravel the cause of and avoidance of LS.

      All I know is I have been confirmed by biopsy that I have LS. A dormant gene triggered by an unbalanced hormonal endocrine system is a possibility but what can we do about it. Hopefully research into LS will support us one day.  

  • Posted

    Hi Norma,

    I am convinced that LS is a genetic disease.  I am pretty sure that my father has it, as I have been told he has a "skin problem" and that he uses dermovate ointment, but although I have told him that I have LS, he has never confided in me unfortunately!  My sister seems to have a mild version of it, if this is possible.  She doesnt want to have a biopsy, so just puts up with it. Are you from the UK?

    • Posted

      Hi wendy, Yes I am English and in the UK. I think there is a strong possibility that we could be predisposed to LS when it runs in families. 

      I favour a biopsy as it diagnoses any vin or malignancy that may be present and confirms the presence of LS.

       

  • Posted

    Dr Andrew Goldstein, the specialist for LS does say it is familiar.  He says I believe, your sisters, daughters, etc would have a 1 in 3 chance of having it if you do.
    • Posted

      Hi woozie, I would go along with that. I have already made my daughter aware and adviced her to check herself regularly for any signs. I wish there had been awareness for me as I am sure I have had LS for much longer than I realised.
  • Posted

    This is why I told both my sons about it and asked my sister and mother. None have it.
    • Posted

      Hi Morrell,  It's good that you promote awareness. I hope your family continue to be free of LS and if it does raise it's ugly face you will give good advice.
  • Posted

    Hello Norma,

    I asked my doctor if I got it through heredity and he said probably not. My dad had skin problems and my son has skin problems, he said the type my dad and son had did not have anything to do with my problem.  I am luck that my LS acts up only once in a while and for a few days at a time. The first time I had it my GP was treating me for a yeast or urinary infection.  No matter what he gave me, it only made it worse until I went to the Gynocologist.  He put me on a two different creams, I quit using both, the one was estrigen and seeing where using it for prolong periods of time could cause cancer.  I don't think either cream helped anyway, they were very expensive to buy. I will just live with the problem and deal with it as it comes up. 

      But if your family has the same condition, I don't see how it could not be passed down through the family, a lot of things are passed down including diabetes.  I think mine comes down from my dad's line.

    • Posted

      If your gyecologist diagnosed LS then your GP has not shown enough knowledge about LS so I don't think the GP's opinion is a substancial one. Did you have a biopsy to confirm LS. I assume you are not in the UK if you have to pay for treatment. We are very luck here in the UK as the Nation Health Service funds our care and treatments. The amount of family connections to LS does point to genetic or LS is a lot more common than what is thought.
  • Posted

    I believe my mother had it, but never spoke of it as it was too personal. Just some things that I found out after her death led me to believe that she may have started suffering with it in her forties...around menopause.  My mother was Irish, Welsh and French...very fair skinned, and a redhead.  I'm not as fair skinned as her...but still very fair with dark blonde hair...so it is an interesting possibility if we find a large percentage of women with a similar ethinicity.  My good friend is Scottish...and she has it too.

    I've often wondered it it could be linked to arificial hormone replacement...I mean it comes from an animal...mind started when I was using estrogen creams for vaginal dryness. I had a terrible reaction to both types they put me on...and that's when mind all came about.

    • Posted

      I am of German decent and like your mother, my mother would not discuss anything in that field, not the facts of life, nothing.  I don't think my mother had these problems, just my dad and son and my son has it on his fingers and one leg.  When I was young, I was light skinned with blue eyes, I never had the problems with menopause, I was one of the lucky ones that never went through all the problems I hear so many other women go through, I am 60 years old.  I never had very  many cycles and the problem with the LS came up almost two years ago when my doctor did an exam, I was so sore, that is when he gave me the prescription creams.  My doctor's nurse told  me that it is not uncommon for women to have LS, more than I would think, she said. her mother had it also.  

        When I went in to see my doctor for  my yearly exam he asked me if I wanted a refill on the two creams, I told him no, but I would take a refill on the creams people use for yeast infections, that seemed to calm down the problem more than any of the other creams he had given  me.  I did not have a yeast infection when I started using the cream since they did do a yeast infection test before hand, but for me, that type of cream helped.  I won't use the estrogen creams, they give warnings of using that cream too much since it is linked to cancer.  

        What works for one patient will not work for another, but I would ask if you could use the yeast infection cream, I use it just like I would have the estrogen cream, not like the directions on the boxes.  They also sell that cream in the stores, but since our insurance pays for it, I get it through the pharmacy

    • Posted

      I have used the cream for a yeast infection with some good results in the past.  However, now I have a natural regimine that for me keeps it in check. 

      I also had the LS on my lower legs.  Fortunately that cleared up when I did the Paleo auto-immune diet for 4 weeks and has not come back...very thankful for that. It temporarily cleared up in the private areas and is much better with fewer flares so I am seriously considering going back on the diet and trying it for a longer period of time to see if I get a total remission.  Currently I have great success with a spray of witch hazel (pure witch hazel can be dilluted with 15% of purified water), but I've also used the one with alcohol at times...although it can sting.  I pat dry and follow this with a dab of 98% or higher of aloe vera gel.  If I get a split I use manuka honey at bedtime...at least 20% with cotton panties for a couple of nights and it heals quickly. There is medical proof of manuka honey being a great healing salve.  This way I avoid the chemicals and the side effects of steroid creams.  Others on other LS forums have had success after trying this.  If you have the itch...this really helps.  However, it does not seem to help with LS on the extremities...at least it did not for me.

    • Posted

      Hi renee, Talking freely on personal matters only seemed to present it self in the later half of the last century. Before then, intimate details were very secretive. How difficult it must have been for our predecessors. Even now I have learned more from the internet in the past few years than I ever did in previous years from relatives or otherwise. Look at my sister too embarrassed to make her condition known.We must talk openly about LS if only to help other be aware.

      I have already made comments on synthetic HRT which I took for 17 years. I believe it may be an immune system disruptor and could kick of any autoimmune disorder one may be predisposed to. My sisters have autoimmune disorders that developed around menopausal years and they also took systemic HRT. Makes one think doesn't it. Have we been guinea pigs for the pharmaceutical firms!

    • Posted

      Well, it's quite apparent that we are not of the equine species...so why are we subjecting ourselves to their hormones?  We have found that estrogen therapy can cause heart issues and cancer in women...so this could also be a result of the same.  I had a TIA while on birth control pills...very mild...and also blood clots in my legs. My doctor did not tell me that the estrogen was the cause. When he left the room...the nurse told me. She said she was telling me to save my life...but to not let the doctor know that she had told me as she would lose her job. Needless to say I quit the birth control pills and sent my then husband to get a vasectomy.  Never another TIA or the horrible leg cramps from the blood clots. over the next 30 years.
    • Posted

      renee, I started taking the bith control pill in the mid sixties. I began having increasingly bad migraine headaches. Never had headaches before taking "the pill" so stopped taking it. The headaches ended so I never took the pill again. My husband had a vasectomy too after our fourth child. He has done some good things for me but that has got to be one of the best.Took Prempac when I was menopausal. At the time I had no idea it was mares peeeeee! 

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