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.
The treatment is now being offered by an American doctor, Dr Nathan Newman in Beverley Hills. WLSS is getting a lot of enquiries about the treatment.
You may comment below, ask questions and interact with others who have either had the treatment or are thinking about it. WLSS needs to offer a legal disclaimer here, in as much as while it is making information available, subject to overwhelming demand, it cannot be responsible for any adverse events arising from you choosing to undertake this treatment. To date, WLSS has received no reports of any adverse events.
WLSS has tried several times to contact Dr Newman to ask more about his work in this area but he has failed to respond. Dr Casabona on the other hand, has been more than generous in making information available.
Use this link to read the published article about the treatment.
Listen to Dr Casabona’s talk on 18 June 2011 Birmingham UK
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.
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….
I’ve never heard of this treatment before. Can anyone enlighten me?
Hello Helen. This is a fairly new treatment of about 3 years. It is being trialled by an Italian Plastic Surgeon, Dr Casabona. It seems that mainly Italian patients have been treated but there is an increasing number of women from the UK who are travelling to Genoa to have the treatment and they are reporting good results. The treatment is also being tried on men and they also are giving good reports.
How can an American get this cure?
So far, Dr Casabona is not promoting the treatment as a ‘cure’. There are some patients on the internet who are saying they are cured because their symptoms have cleared and their skin looks so much better but there needs to be long term trials to see how long the treatment will stay effective for.
At this time, the treatment does not seem to be available with any doctors in the USA .The treatment is available at the hosptall in Genoa, Italy. You need to contact Dr Casabona direct to arrange an appointment.to see him there.
I’ve had this treatment in Beverly Hills, CA by Dr . Nathan Newman. My first treatment was on April 1, 2011 and I had immediate relief from the constant burning I’d been experiencing for the past six years. I was about 80% better and chose to have a second treatment on July 15, 2011. I am now about 90% normal. I have only very minor symptoms.. such as minor dryness, irritation. No burning or pain. I am going to have one more treatment in Jan to try and get me to that last step in getting to normal. I have been extremely pleased with Dr. Newman. He is a very caring and patient doctor. I highly recommend his treatment.
Tammy, I want to say thank you for posting the information about Dr. Nathan Newman. I made an appointment with him for this treatment in March 2012. From the phone calls with Dr. Newman to his care coordinators, I already feel cared for. I also look foward to feeling better. Again thank you for this information!
I just had my first treatment from Dr. Newman in March 2012. Within the first 24 hours of the treatment, the parts of me that we’re inflammed before the procedure had turned pink instead of bright red. The constant burning sensation has stopped. . .granted I am sore but also eager to see how things feel after the post op swelling goes down. I plan on returning in July for my next round.
Does anyone know if this treatment can be for other areas with LS like the breast for instance? Or have all his patience been treated down below only?
I’m desperate to find a solution for my mum to have her pain relieved.
Thanks
I understand that the treatment is only used for vulval lichen sclerosus.
Dr Casabona has been contacted via this organisation and was asked if he does the treatment for extra-genital lichen sclerosus and he has replied that this is not an area of LS that he is involved with. At this time the treatment is only for vulva LS.
I met the doctor Casabona a one year ago and I made him 3 TREATMENT (a stem cell)
as been a discovery for me ..the treatments are very good, and after a year I have not e disturb.
i’m very happy to met Dr Casabona. He help me a lot and today i am very well
if I can give some advice to those suffering from this disordeR, YOU DO THE TREATMENTS
I am seriously thinking about going to Italy to see Ddr. Casabona for the treatment, but if Dr. Newman does the same thing in LA that would be far more convenient for me since I live in NY. Can you tell me if anyone knows of a Dr. doing this same treatment closer to me?
As for Dr. Newman, did he put you to sleep for the procedure? Thanks Aggie
Is anyone performing this treatment in the UK does anyone know?
Hello Rachel. There is nobody in the UK offering this treatment at the moment. Of course, everyone here would like to have access to it but most of the UK doctors are very wary about it and it could be a long time before it arrives here and even if it does, it may take time to get it on the NHS.
I’m so interested in this. I live in Missouri and was hoping that someone knew of a doctor here. What is the cost?
Cindy, Dr. Nathan Newman charges the one time cost of $5,500 for as many treatments as it takes. If you chose to do PRP with the stem cells it is 1,000 extra. He also uses Care Credit to help you make payment arrangements, as insurance doesn’t cover this, due to it being “experimental treatment”. Hope this helps.
how long have you had LS before using the stem cell treatments? I was diagnosed 9 months ago but probably had it much longer
I sincerely hope this treatment will come to Canada! OMG it will be a life saver. Dr. Casabona, we all love you already! Hope you have good health and teach doctors in Canada and around the world asap to help all us females who suffer and who see our lives ruined to date.
I agree I have been suffering with this disease since I was 18 and I am now 54. Right now I am in the middle of a major breakout with peeling, burning, itching and everything else. Would love to have some relief from this disease. It would be so nice to live a normal life.
I have been newly diagnosed with L.S. via skin biopsy and suffer from it all over my body. After all my research I am guessing I am probably lucky I don’t have it in the genital region, however I am MISERABLE and my dermatologist is very quick with me in my office visits (insurance restraints I guess). I have sooooooo many unanswered questions still. Like how long will I have to live on Clobestisol and Pro topic, is my liver in danger with prolonged usage, are there any holistic doctors that treat this, am I at increased risk for skin cancer even though it is not in my genital region, is there a gene test to see if I am at risk for other diseases, will my endocrinologist be a better doctor to treat me since she treats my Hashimoto’s low thyroid (another auto-immune disease), why have I been put on 3 months minimum of Doryx (a form of tetracycline that causes me great heartburn), am I at risk for more auto-immune diseases, is there a way to strengthen the immune system against this or is the goal to suppress the immune system…etc. etc. I am at a loss as to who is going to answer all these questions…
Hi there, I feel your pain even though I do not have LS myself, but my teenage son has had it now for about two years. We’ve been through numerous visits to a couple of dermatologists, a skin study and treatment plans – none that have helped. Some steroid creams worked, but I’m really concerned about the thinning of the skin. The last dermatologist we visited did a skin biopsy that confirmed LS and recommended Light Therapy, which we have yet to give a try due financial constraints and to the 2-3 visits they require. My son was also put on amoxicillin for three months to see if that would’ve helped the condition, but it did not. They also recommended (as a last resort) chemo meds, which I am not willing to put him through. There are so many unanswered questions and so many overwhelming feelings – especially for my son. He will not go swimming or participate in any activities requiring him to be shirtless due to his marks and being embarrased by them. It really breaks my heart for him to be going through this and not knowing where to turn to for help and answers. He is also at that age where he doesn’t even want to show me his marks and gets frustrated when I ask him to keep watchful of any new spots in his private area. I am not sure what to do anymore except pray for him and for this condition clear on its own. I hope you find answers soon.
Hi! I don’t think that a recent diagnosis of LS would make any difference in terms of the stem cell therapy. The important thing would be to have an examination by Dr Casabona so he can see the extent of the damage and what would be required exactly in terms of treatment. He has now acquired sufficient experience with the many cases he has treated to know more or less what will be required. Each patient reacts differently and some people have had more relief than others. The treatment can be repeated to increase the efficacy. I have had 3 treatments now and only require a moisturizer and occasional application of Halicar to keep things feeling good. DIscomfort is minimal. I hope this helps …
I come from China.Women, aged 29 years old.
I had the disease.When I graduated from college, with this disease.
At the same time, my eye suddenly, the chin is always from the package.But I only recently go to the hospital, knowing that had the disease.Its severity.
I want to be healthy.I believe I can recover.Because when I got sick, my eyes and chin at the same time there is a problem.
Doctor, you can help me?
China’s treatment is not very advanced. I hope I can get help, so that more Chinese people happy.
I have had Lichen Schlerosus for many years – first in areas other than the genital area, ie. below the knees, back of the left hand, on both wrists, tops of feet. Then it subsided, I had used some naturopathic and holistic methods.
Then it came back to my genital area and anus, with itching and burning.
The 2 things that have helped me tremendously are:
1) low level laser treatment (I rented the machine and did daily treatments myself) – the skin colour improved and the lesions disappeared, but I had lost my clitoris and inner vaginal labia already and still cannot have vaginal sex as it is too tight. See http://bioflexlaser.com/
2) a chinese medical dr. specializing in dermatology – I take some dreadful tasting teas and they really help with colour, no burning, itching, smoother skin, no progression of symptoms.
I am going to do Dr. Casabona’s treatment in Italy, hoping it will allow me to stop spending my days, energy and money on this LS.
My best wishes go to all the sufferers of LS.
Hi everyone, I have had this condition for about 7 years, my breast is badly scarred and I have the usual problems down below. The more I have found out about the condition the more afraid I become. I have seen a dermatologist twice and have been given steroid cream, no information and no automatic follow up. I feel I have been let down by the NHS . The condition seems to have been brought on by stress. I may be wrong. Does anyone else think that? Best wishes with your symptom control .
Is there any hope for people who can no longer have sex? The pain is out of this world and penetration is almost impossible. Will the stem cell therapy help this problem as well?
Hello Michelle. The stem cell therapy is very new and still being trialled. Some patients are saying that it has helped their sex lives – but it cannot be guaranteed. It might depend on the reason sex is difficult and getting help for that particular problem. Painful sex can sometimes be caused by other things than LS and a good consultant could help you to know whether it is the LS or not. There are some helpful things that can be done and finding help could offer you some hope. If you have regular follow ups for your LS, ask your consultant about the problems. If you are not followed up, your GP can refer you to a vulva clinic (if you are in the UK) or a doctor with knowledge of vulva problems if you are somewhere else in the world. Either way, you can always mail me and talk about this privately. admin@lichensclerosus.org
Oh, I am so thrilled to hear about this. My pelvic physical rehab therapist told me about it today. She says about 1 out of 20 women she sees has this, but my case is the worst. Just the other night I said to my husband that now I know why some people with chronic pain think about committing suicide. Some days I can’t bear to wake up the next morning because I know it is going to hurt. No one knows how painful the knife cutting pain of Vulva lichen sclerosis can be and how it can change your life. I have researched it many times for myself and my daughter-in-law and found that there is no cure and that it is chronic. The only thing to do is use different creams and ointments such as steroid creams, ice, olive oil, Seitz baths with oatmeal, Perrins, Dr. Banks cream (a local dermitologist has created this). But to think there might be a cure is an answer to prayer. I am a very active 76 year old who plays golf (or did) about 3 times a week. I am involved in my church and many volunteer organizations and spend my time creating answers to other’s problems when I feel like it. I also have a son who was in a car accident 20 years ago causing traumatic brain iinjury multiple physical injuries and damage to the syrinx. I spend a lot of time getting help for him both physically and economically. This is a big stress for me and may cause some of my discomfort. Please tell me what is the next thing I can do to find out more about this treatment. .
Martha, we share a similar family connection, as my son was injured in a road traffic accident as well, his issues are different to your son’s but I understand your situation. I suggest that you try to find someone who can help you with stress management. There is a lot of information on the internet about this, stress management means you having to make time in your day for you but it can be really helpful. When I started this site in 1997, pain was never, ever, a symptom of vulva LS but over the years the doctors seem to want to bring that into the picture and not all doctors (internationally) agree with the idea that LS is painful, it is mainly itchy. It is difficult because the standard treatments for LS do not usually sort out any pain, pain can be something called vulvodynia and this needs different treatment. As far as the stem cell treatment is concerned, Dr Casabona in Italy has tried the stem cell treatment for women with vulval pain (whatever the cause) and he says he is having success with this. If you wanted to contact Dr Casabona, you need to use the email contact address on this site on the page for stem cell treatment. If you want to contact me personally, do mail me at admin@lichensclerosus.org I hope this is helpful and I hope your doctor will think more about treating you for vulva pain, rather than for LS because there is a difference. Be well soon.
Hi, i hav recently been diagnosed with LS, reading all these comments has been very helpfull, I have it in the vulva area and the itchin it causes is driving me crazy, i have been told to use dermovate ointment plus ovestin creme twice a week. This helps for only one day, why cant i use it more often to keep severe itchin under control, can any of your readers give me any advice, on how they cope with it all
Thanks Eileen
Hi ladies,
does anyone know if this treatment works for vulvar lichen planus?
blessings to all of you
Carolin
So far, this treatment seems to have been tried on lichen sclerosus only. If I find out anything at all about it being used for lichen planus, I will post a message here. The Italian doctors are doing a lot of trials now, not just Dr Casabona, so hopefully this will bring more information.
Hello Carolin
I asked my Italian contact to speak to Dr Casabona about this question.
This was his reply:
“Of course…. lots of times… good results… in terms of improvement of quality of life, itching and burning, but more difficult to have sex again..because it is very obstructive and has a tendency to ulcerate a lot,”
I hope this helps.
Martha has given me an idea. I never thought it LS could come from stress. I empathize with her as I also have an indigent and disabled son, only diagnosed with myotonic dystrophy 4 years ago. After losing his job, he moved to my home and I have been caring for him since–paperwork, medical visits, seeking resources, etc. My history shows many different forms of stress symptoms, but this LS seems to be the newest, diagnosed the end of February. I know how to keep most of the other stress triggers in control.
My way to get away is take a trip, which I did last month for my 77th birthday–all the way to Berlin to stay with a friend. I came back with a fresh start and good-looking fingernails (had been short and splintered to the quick before I left).
After my first regimen of betamethasone valerate ointment and vasoline before the biopsy (no cancer), I am back on just the bv twice a week. I have very little discomfort and hope I won’t have a bad checkup when I next see my doctor. Reading all the stories of others makes me quite anxious about what I may have to look forward to.
Julia, anxiety is a common ‘symptom’ of having LS but many of us who have had it for years have had our challenges but we are still warm, lovely women who enjoy good things in our lives, even though there are many negatives, life has lots of good things to offer us as well. Remember that support groups tend to attract people who are being seriously challenged , who feel isolated and who need to share their plight with others, to be able to speak and to be heard but I know thousands of women who have less complicated LS and are doing OK. Maybe you will be one of them. The trip and the new glamorous nails sound absolutely delicious! So many of us thank heavens for Vaseline! Would love you to share your tips for taking care of stress and stress triggers. Take care and be well.
I was diagnosed with Lichen sclerosis atrophy four months ago after starting a new relationship with a gentleman, I thought I had thrush. Three and a half years ago I lost my husband whilst on holiday in Croatia, it was a devastating and stressful time, two years later I was diagnosed with thyroid disease and now LS. In hindsight I did have a little discomfort before being diagnosed but now it seems to be a daily inconvenience, I still have my male friend and he does not know about the LS, I have no pain during sex but I often suffer the next day. To think of a lifetime of this not to mention the symptoms getting worst and my private parts atrophying is terrifying as I am a very young 63, very active and quite interested in having a physical relationship. I find a lot of the sights seem to be directed to the medical profession not the general public and I wish they would write in terms that I did not need to check in the dictionary.
I am very interested in the stem cell treatment but it is a long way from Australia, would you be able to suggest a suitable doctor here in Australia for me to go to, we do not have vulva clinics
and I would like to visit a doctor or specialist who is interested in this disease
Hello Lynne. I am going to email you privately to suggest a doctor in Australia, who may be able to help you.
Hi, I am also in Australia, and would love to know of a doctor here who you could recommend seeing regarding LS.
My main sysmptons are thinning of the vulva/anal skin area, with regular fissures(splitting, tearing of skin), but it is seldom accoompanied with burning and itching, ( I count myself lucky for that) although sometimes it has occured before. During both of my pregnancies LS symptoms have mostly vanished (which concinves me that this is a hormonal based problem) and after the birth of my second son it all stepped up a level. (bugger!). I treat LS as holisitically as possible, and I have not gone down the road of steriod creams as yet. I have recently descovered a skin balm from New Zealand that has been a miraculous turn around for me personally.. called Antipodes SAVIOUR Skin Balm, all organic and natural ingredients,(google it) it has healed any open tears that Ive had within a day or two, and since I have been using it for the last 3 weeks every morning and night in the areas of the vulva and anal areas that usually tear, I have not had any reoccurance of this problem and it even seems like the scars have become lighter and healing into healther stronger looking skin. I have started having more regular sex with my husband too, who has been at his wits end over it all. It really has been a saviour to me, as I was starting think my marriage wasnt going to make it through with LS causing major problems in our relationship, and this has wore heavily on my soul, as I want so much the my children have both parents around living together and being able to love one another in all ways natural… LS puts so much pressure on my relationship.. I understand why the Italian Dr also works alongside a physcologist, as sometimes that part of this condition makes me suffer as much as the physical side! I hope anyone that reads this and decides to try the Antipodes Saviour Skin Balm has as much success as I have, I realise it is early days yet so I will try and update more as I keep up with it. I also have some dermitilogical problems on 2 of my fingers (different hands), and had a rash type of thing appear on the tops of my hands and the skin balm cleared them up after repeated use, to my great releif. I am also taking supplements for Leaky Gut syndrome, which a homoeopath has said could be a deeper cause of why I have LS.. not sure , but willing to give it a go.. can only be benificial longterm anyway. Thank you to everyone for sharing.. it means a lot, and massive thanks to Doctor Casabona for dedicating his time, knowledge and compassion towards woman with this most unfortunate condition, I hope one day I can have this stem cell treatment to help resolve LS and regain my full womanliness…
Lou. There is a good female dermatologist in Victoria who is knowledgeable about LS. Dr Tanja Bohl.
I am 55 living in Dublin, do you know if there is a support group in Ireland. I feel very alone. I am interested in stem cell treatment. I would like to find out about the cost?