1. Community
  2. Women's health
  3. Lichen Sclerosus

Desperately seeking Stem Cell Treatment anywhere close to Australia (Asia?)

Posted , 11 users are following.

sia08807
sia08807

Hello everone,

I found this page and have desperately been reading as many of your stories as I can. My mother was diagnosed very late with Lichen Schlerosus after seeing many gynaecologists who still missed it! I was with her on her journey when they discovered she had developed Vulval Cancer as a result of this horrid condition. She underwent a radical vulvectomy which I would not wish on anyone.  Every time I accompanied her for her checkups I would ask her gyno/onc if this condition was an inherited condition and should I expect to suffer also. There reply was NO every time. Well guess what I have it. I have decided not to use the steroid creams which are prescribed but have chosen to have multiple PRP (Plasma rich Platelets) treatments. These have not worked. I am looking to have autologous stem cell treatment and wondered if anyone has any knowledge of anywhere closer to Australia where it might be offered. Seems we are way behind in many things out here. I'd love to hear from anyone who may know.

I'll keep reading all your stories in the hope that together we can find a suitable treatment or at least treating professionals who have a more holistic approach to health!!

All the best to everyone

Sia 

0 likes, 7 replies

7 Replies

  • sarb73328
    sarb73328 sia08807

    Posted

    I have never heard of these treatments here in the UK. Why would you not use steroid creams? I have read that there is some evidence that they can prevent cancer from developing. Your mother's story is tragic and one which all of us with LS dread. I hope you find the treatments you desire, but meantime urge you to try all the potions suggested on this thread to keep LS under control. Best of luck - Sarb

     

  • claire12259
    claire12259 sia08807

    Posted

    Hi Sia

    Just to say I put my LS into remission with dietary changes. I couldn't use the steroids as it just irritated things more.  I got quick relief by cutting out sugar, dairy and gluten. I have started eating gluten and dairy with no ill effects. Sugar seems the one to avoid.

    Sorry I don't have any info on your queries but just thought you might like to know you can possibly get rid of it by just cutting stuff out of your diet. Obviously this won't work for all but its worth a try!!

    Good luck on your journey xxx

  • susan39248
    susan39248 sia08807

    Posted

    Hi Sia

    so sorry to hear of your story and the results of  your poor mum not being diagnosed. You have the benefit of knowing what you have. Can I suggest that while you search for stem cell treatment that you do use some of the other treatments available, prescribed or alternative and keep a photographic record so you can monitor what is going on? I imagine you are quite a young woman and you really don't want to end up with the range of symptoms that this condition can give you if untreated. Good luck with it all.

  • angela0180
    angela0180 sia08807

    Posted

    Hello Sia,

    I was recently diagnosed with L.S. and I am 57 years old. As devastating as this diagnosis has been for me, there is good info, in this forum. I don't have an extreme case, though I have suspected that I had had it for 2 years or more. Unless, your body can't take the Clob, I would suggest trying this first. I know some control with diet. but whichever you chose, you should do something. God Bless you and your mother.

    Angela from the U.S.

  • amanda75022
    amanda75022 sia08807

    Posted

    Hi Sia

    So sorry to hear your sad story.  I have just returned to Europe from Oz (lived there for 30 years) as I could not have the treatment you desire in Australia.  I had stem cells treatment in Italy with Dr Casabona and it works!  I could not tolerate the Clob steroid and perpetually had a circle of LS flare up and thrush, coupled with steroid intolerance.  Depending on the advancement of your condition you may need multiple treatments.  There are clinics in the UK offering this one being the Nottingham hospital with a Dr David Nunns ( you will only get offered it in the UK if steroid and other pro topics do not work for you).  Other than than those there is a Dr in LA USA if you google it I believe his name is Nathan?  Anyhow, many people go there.  Dr Goldsmith Newyork USA (see world webpage for LS) is currently looking for patients to travel to USA to participate in a Stem Cell study.  You would pay your own flights, hotel etc and you must not have had any stem cell treatment before.  After study he is offering free treatment to those that participate. There are other treatments available in China that some have found successful (Chinese Meds).  I haven’t experienced those myself.  Use the Borax for the itching and I use Collodial Silver baby Avena products to wash with and find these very good.  Like others, a diets of high sugar irritates my skin.  I take allergy tablets in the evening when and if i feel itchy.  Hope this info helps you. All the best😀??

    • sia08807
      sia08807 amanda75022

      Posted

      Thank you so much Amanda, I appreciate the information very much. At this stage I will pursue the stem cell treatments as soon as I can. Can you provide me with a costing for Dr Casabona's treatment and is he using your own stem cells? How long did you stay and where? I've heard of a Dr Walsh who visits Australia and also sees patients (or at least his doctors do). The cost is high! I will check out your other leads as well and thank you once again. I wish you continued good health. Oh sorry another quick ? are you menopausal and do you use any hormonal treatments?

      Cheers

      Sia (land down under!)

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.