Stem Cell Treatment for Lichen Sclerosus
by Fabia Brackenbury – Founder.
This is a patient advocacy and non-profit. Information and education is aimed at being in the best interests of patients and may present anecdotal evidence that some people may find uncomfortable but others will appreciate.
Please read all the information on this page before emailing with an enquiry and please note that, for legal reasons, emails requesting information or asking inappropriate questions about doctors who are offering this treatment outside of a multi-disiciplinary or dedicated clinical research environment and who are not included on this site cannot and will not be replied to. If you have had stem cell treatment and have any concerns about the outcomes, please contact that doctor directly 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 multi-disiplinary clinic, or team, who have a very strong background of experience working with stem cells.
The Association for Lichen Sclerosus and Vulval Health is an English (UK) based non-profit, that has been supporting and educating patients on this website since 1997. It is a voluntary organization and nobody gets paid for the endless hours of work put in ‘behind the scenes’. The Funds Manager, Director of Projects and I give our time free of charge. Doctors and clinics are not asked for payment to have their name on this website. Doctors for stem cell are mentioned because they have proven, over a period of time, to be helpful to LS Patients and to want to engage with patient organizations and help patients in the widest sense and not for advertizing purposes. It is unethical to advertise doctors in the UK. However, for the sake of education, and because, I had so many emails asking for information. The choice was made to add details of dedicated clinics here and this was stricly against legal advice. The Constitution of this non-profit provides a clause for informing and educating on new treatments. Neither I, nor any agents of this non-profit, take any responsiblity for any situation arising from the information provided. You must contact doctors directly and you must rely on your own investigation and judgement before proceeding with the treatment. Dr Casabona’s work is recognised by the Italian government and National Health System. It will be governed by ethics and protocols, in a similar way to standards in the UK. Clinics and doctors named here, will NOT be offering misleading advertising, aggressive marketing tactics (including putting you under pressure to fundraise to pay for treatment fees. Clinics on this page will not be condemning the use of potent topical steroids in the treatment of LS, or giving incorrect information that steroids thin the skin, as a way of persuading people to use their services, or encouraging their patients (or condoning them) to make statments on the internet that include negative statements about steroids.
Evidence is now emerging that suggests you do not have to ‘know’ anything about LS to use stem cells to treat it. However, a really strong background of treating conditions with stem 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 stem cell work and who may be mishandling the stem cells in conditions that are not suitable. It is not about how many patients have been treated its about being treated by someone who knows and understand how stem cells work best to treat each individual patient. 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. Those interacting on closed and private forums are now asking what the difference is in the way doctors treat with stem cells and many are under the impression that the more stem cells you have the better. However, the more sensible approach, is the same as it would be for any other medical condition and for conventional treatment for LS. You only need to have the amount of treatment you need for your OWN case, given to you by the most educated and experienced doctor. Its not a competitive game between patients who share experiences, about who is the best doctor or who gives the most for your money and Italy, treatment is free on the Italian NHS so money is not a consideration. Its about treating you. For many doctors new to offering this treatment, the amount of treatment they give you may be experimental and offered in accordance with their beliefs, rather than their experience.
In addition, 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). It is wholly, selfish and unprofessional to mislead patients by giving fear messages about steroid treatment, when less than 1000 people worldwide have had access to stem cell treatment and the rest of the world LS population do not deserve to have their only other accepted treatment maligned – and this is particularly relevant with regard to children with LS. (It is suggested that you read the ‘recommended reading’ articles on the main information page.)
Patients all over the world are keen to hear about the experiences of those who have had stem cell treatment. Grateful thanks to those who share openly, here, with the World, rather than only sharing in private groups and denying access to others. It is understood not everyone is able to share so generously and that is respected, but your comments will be appreciated. If you are happy to share your experiences of treatment by Dr Casabona and Dr Lander, please comment below.
Stem cell 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
Stem cell treatment in the USA
For stem cell 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 stem cell 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/
Stem cell 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 stem cell treatment that Italian plastic surgeon, Dr Casabona, is offering. Patients are sharing their experiences on an Italian forum.
This is one woman’s very positive experience of having the treatment and WLSS is very grateful for her kind generosity in sharing here for others.