Cell Therapy and PRP for Lichen Sclerosus
The Association is asked if there are any new treatments. The truth is that there are no new research proven interventions but Dr Casabona, in Italy is doing promising work with stem cell and PRP. He remains the first person in the world to use these techniques to relieve the side effects of lichen sclerosus. The governing document of the Association requires that information is shared on 'anything new' and therefore it complies by sharing what some doctors are trying. You must make your own enquiries and consult your own doctors about new treatments and if you undertake any of the treatments mentioned here, you must do so at your own risk. The Association has received feedback, particularly from USA patients, that Dr Casabona has been able to relieve their discomfort where USA doctors have failed.
PRP Treatment for MEN and women in the UK. Dr Casabona has recently shared that PRP only treatment is proving successful in men. PRP treatment is not currently licensed via the NHS for LS. If you would like information about how to obtain PRP for lichen sclerosus from private, non-NHS providers in the UK, use the contact us link.
United Kingdom Information for Stem Cell (known as Fat Transfer in the UK)
It is considered unethical in the UK to name doctors in public. In the past, the Association has complied. However, requests for information about doctors offering treatments is now overwhelming and the Association is unable to keep up. To enable patients to find the doctors we now publish their details for your use:
Professor Peter Butler, Department of Plastic and Reconstructive Surgery, Royal Free Hospital, Hampstead. Requires a referral from your GP. Will not treat you if you smoke and will insist you give up before treating you. Performs treatment under a general anaesthetic. Long waiting lists. Often many cancellations are experienced. Does not treat men. Patient feedback expresses concerns that delays and cancellation of treatment will mean that they will experience more deterioration of their condition and they find that after care information is not adequate. They find difficulty in contacting staff for after care queries.
Dr David Nunns, City Hospital, Nottingham. Consultant Gynaecologist/Oncologist working with the Plastic Surgery department. Requires a referral from your GP. Does not share information with the Association. Performs treatment under general anaesthetic. Does not treat men. Patient feedback for those fortunate enough to be treated is fairly good, however, Dr Nunns has turned away some patients, informing them they do not need the treatment and sending them away with more steroids and this has caused unhappy frustrations for those waiting for months to be seen, only to be turned down.
The Association asks 'Can stem cell treatment under the NHS be sustainable and delivered in a timely manner so as not to disappoint patients and cause them further tissue damage while they wait on long lists?' It is suggested that you use the information above to ask relevant questions of the doctors to address any concerns you may have and to seek reassurance.
Additional Information: Stem Cell needs to be considered a complementary treatment and not a substitute for using steroids. Please be aware that you may still need to use your steroid treatment and you may be at risk for further complications if you cease using them.
It has been shared by one patient that she was never told the benefits of using steroids for her own case by her consultant and did not use them. As a result she now has considerable scarring and clitoral phimosis. She has undergone both stem cell and PRP. When she contacted the Assocation, it was suggested to her that she try the steroid and she reported back that it had made a very big difference to her symptoms and quality of life.
Lichen sclerosus remains a chronic and complex disease, with far too much misleading information delivered by the internet and patient message boards. The aim of this Association is to try to offer information that is backed by science, research and the experience of the few dedicated doctors around the world, who are actually making a difference.
More research is needed to give a fuller picture of how effective stem cell treatment can be for everyone. It works for some and not for others. It may be helpful to ask yourself what you are trying to fix (scarring/itch etc) and then ask the doctors involved to tell you their success rate so far.
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: firstname.lastname@example.org
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 this technology to treat Interstitial Cystitis and is now offering the treatment to patients who have lichen sclerosus.