Cell Therapy for Lichen Sclerosus
This page is written with the intention of being in the ‘best interests’ of patients who wish to try this treatment, as far as this is possible. Patients in general have a very difficult time trying to find educated doctors for LS in the normal way. As this treatment can be very costly, this organization aims to offer details of professional, responsible practitioners rather than those who use inappropriate and misleading advertizing tactics.
‘Stem Cell’ has become the short name for this treatment and it is now widely used on the internet and in hidden forums and emailing groups. However, it is misleading and should more correctly be known as Adipose-Derived Mesenchymal Cells and Platelet-Rich Plasma in Tissue Regeneration.
Dr Francesco Casabona is the first doctor to pioneer this treatment for lichen sclerosus and is the undisputed World Leader. Dr Casabona is the only doctor who treats patients from all over the world and has been working with cell therapies since the 1990′s. The technique used is well known to plastic surgeons in breast reconstruction work.
This organization does not reply to emails about this treatment. You need to ask questions of the doctors who are listed on this site.
If you have had the treatment and have any concerns about the outcomes, please contact the doctor who treated you and ask for your concerns to be addressed.
It is the policy of this non-profit to support the work of dedicated centres for stem cell research or doctors who are working in a multidisciplinary clinic, or with a team. No information is given about sole or lone practitioners.
Evidence is now emerging that suggests you do not have to ‘know’ anything about LS to use adipose cells to treat it. However, a really strong background of treating conditions with cells is a more desirable choice to make in a doctor, than one who has only taken training in how to do the procedure for LS and who will have a limited background in adipose cell work and who may be mishandling the cells in conditions that are not suitable. It is not about how many patients have been treated, or about how many cells are used by various doctors. It is about being treated by someone who knows and understand how the procedure works best to treat each individual patient for their own needs. There is no ‘one size fits all’ treatment, even with steroids, to suit every individual person.
Anecdotal evidence from some patients, indicates, that use of steroid treatment may still be necessary and you are reminded that this approach is new and outcomes are varied in each individual case and it may take years for actual outcomes to be known.
Take time to consider what it is you are trying to achieve. The longest reported ‘remission’ in symptoms has been between 3/4 years, before repeat treatment is needed. LS is a complex condition that affects everyone differently. Its not likely that even talking to others will bring you all the answers you are looking for. However, you will need to rely on the honesty of the doctor you choose to tell you if: ‘your clitoris will grow again’ or ‘your labia’ and if the treatment will solve the problem of sexual difficulties associated with narrowing of the vaginal opening. One doctor has already been honest enough to say that the treatment does not restore the clitoris itself, but the treatment has helped to unfuse clitoral phimosis.
Steroid treatment is still the worldwide treatment of choice and is effective in 70% of cases (plenty of published papers on the internet bear this out).
Treatment in Italy
Please do not contact this organization to try to make an appointment with Dr Casabona as all appointments are dealt with by contacting him.
Please email: email@example.com
Treatment in the USA
Please contact Dr Elliot Lander of the California Stem Cell Treatment Centre. A patient introduced this non-profit to Dr Lander’s work. He has been using this technology to treat Interstitial Cystitis and is now offering the treatment to patients who have lichen sclerosus.
A helpful guide to making choices about whether to have stem cell treatment is available from the International Society for Stem Cell Research. You will find a very sensible patient guide booklet there.
See also http://www.cellmedicinesociety.org/
Treatment in the United Kingdom
There are no doctors offering the treatment in the UK. However, if the treatment does become available, it is likely that it will be ‘trialled’ on a group of patients first. In the hope that the treatment will be available one day (although there are no guarantees), a list of people who would be interested in taking part in a trial is being compiled by this organization. Please email, using the contact form, on the contact page and ask to be informed of any patient trials that you would be happy to take part in for stem cell treatment.
Update…8 March 2013 (International Women’s Day)
Happy to announce the opening on 4th March, of a new clinic, dedicated to the treatment of lichen sclerosus. The Italian doctor, Francesco Casabona, has been pioneering a multi-disciplinary clinic for patients. The clinic is a centre of excellence (believed to be the first in the World) for lichen sclerosus and is at the Hospital Gallino di Genova. The President of the Italian Lichen Sclerosus Association was in attendance at the opening.
There is quite a lot of interest in the treatment that Italian plastic surgeon, Dr Casabona, is offering. Patients are sharing their experiences on an Italian forum.
Use this link to read the published article about the treatment.
Listen to Dr Casabona’s talk on 18 June 2011 Birmingham UK
An Italian man shares his experience of the treatment.
This is one woman’s very positive experience of having the treatment.
Hi to everyone, and here is my story of the therapy received from Dr Casabona in the hope that it can be of use to others considering the possibility of following the same route. I am 64 years old. I am writing from Italy where I live and where this new treatment has been perfected which is giving hope to dozens of women from Italy and now abroad too. At the beginning of December 2010 Fabia asked me to check out the Italian support group, which was new at the time. I went into their site and discovered that the big news was a specialist in Genoa, Dr Francesco Casabona, who is part of a Plastic Surgery Unit at Villa Scassi Hospital in Genoa. His is a multidisciplinary approach. He collaborates with the blood transfusion centre in the hospital and with gynaecologists and other specialists such as a psychologist, on this new technique which has won him an award in Paris and has been published in the American Journal of Plastic Surgery (article available on line in English under LS stem cell treatment therapy.) More recently the technique has been presented at an Open Day for people suffering from LS in the UK organised by Fabia in Birmingham in June this year and at a medical congress in Paris in September. He had operated over 100 cases of LS at the time I first saw him, I imagine the number has now doubled. I met Dr Casabona in December in Genoa at his private surgery where he explained his technique to me. He is a wonderful, kind and understanding person who immediately inspired me with confidence and has time to chat and listen to each patient’s story. His English is good. On Jan 21st I had the therapy, a day hospital treatment. He considered my case “mild” or possibly not even LS, despite the fact that I had been suffering for 9 years and had had a diagnosis of LS from 4 dermatologists and was quite desperate and very tired of using Protopic twice daily. I knew perfectly well that Protopic could have negative effects but it was the only thing that worked for me and allowed me to live a fairly normal life so it was a calculated risk. Dr Casabona has since told a number of post-menopausal women that he does not consider their cases LS – it seems he divides cases into the more devastating type of disease which strikes younger people and the situation he found in my case and several others of the people consulting him from abroad, a kind of post-menopausal deterioration of the part. He told me that he had had good results on similar cases to my own which inspired me to go ahead. He thought that for my specific case the basic treatment could be used on me, taking blood samples at the transfusion centre (my own blood) and treating the blood with PRP to form platelet-rich plasma which is then injected into the part. About six injections of anaesthetic are given and these are much like a visit to the dentist. After that the therapy is totally painless and while the part looks and feels “bee-stung” – lovely term which was coined by another person who has had the treatment, it describes it perfectly.
The treatment can be repeated after 3 months if a total disappearance of symptoms is not achieved. Otherwise, depending on the gravity of the case, Dr C also combines this treatment with the taking of a sample of adipose tissue from the abdomen and/or knee. This is then treated and injected into the part too. About 6 injections are given to anaesthetize the part and then you feel nothing. The whole thing takes about 15 mins in the operating theatre, the team are charming and benefit starts after about 6 days. The situation continued to improve over the next 2 and a half months. I had about a 75% improvement with marked reduction of itching and burning using only a soothing gel recommended by Dr C on the part. I was back teaching the day after the therapy so it was not incapacitating. I was also told I could continue using my own regime of treatment as I awaited results but it was not necessary. In May I had a second therapy, again only PRP and not with adipose tissue in an attempt to improve the situation still further. I think I can now say I have a 90% – 95% improvement while there are days when I feel a total absence of the itching and burning which were part of my world. My feeling is that I could have got to 100% but chose to spend the summer in Greece with daily swims and too much heat so I had some discomfort in August. Since I returned in September there has been a continued improvement and at the moment I would say the situation is stable and much better than I ever dared hope for! The skin of the vulva has returned to its original state – pink and plump and healthy looking – the result of the process of regeneration with the new cells. I had forgotten what it looked like!
I should mention one more point: as I live in Italy and am only a couple of hours’ drive from Genoa Dr C knows he can see me easily and frequently and so it is quite probable that the timing and frequency of the therapy is based on this knowledge that it is not difficult for me to reach him, have check-ups etc. He has always been there for me, readily available on the phone and for appointments whenever I asked.
Do hope this helps and contact details are below if anyone wishes to contact Dr C - my Man of the Year.
Dr Francesco Casabona
Specialist in reconstructive and plastic surgery
PS I forgot to say that Dr C hopes in the future to pass on his technique to other doctors/surgeons who may be interested in the therapy so hopefully the therapy will be available around the world before too long….