Research Findings 6-30-19

OH you dearheart, Beverly! I hear your passion about wanting to solve this totally egregious affront to humanity.

I think we need to think in terms of searching out benefactors who are interested in underwriting "rare" or "orphan" diseases.

I looked that up earlier today and find we will have stiff competition even at that. There are so many truly horrifying things out there that are deadly or painfully disfiguring etc. This one won't kill us. Perhaps we need to appeal to those who are working to right the wrongs (or simple neglect) against women in general though that would be fraught with sensationalism etc.

I'd be interested to know how LS is perceived and acknowledged in other countries, to get a broader appeal started. So if anyone on this list speaks/reads french/german/italian/czech etc that might be a good start...

There are a series of requirements for anyone wishing to use data on people (health or otherwise) and for those who study people's behaviors. The dr, licensed by the state, must maintain confidentiality except for discussing one's case with another dr. For his/her own interest, patients' records CAN be studied but that data cannot leave the practice, generally, without, patient's signature that there will be no identifiers attached to the information. Much of the body of regulation stems from the end of WWII when the atrocities of the holocaust were discovered and then again in the 1970s when it was learned "doctors" and the govt had experimented on live patients with LSD. Efforts to protect patient's privacy redoubled after the news of the Tuskegee Airmen. If it was found that a doc was polling patients on personal health information without the proper protocol, I would guess the state medical board would first fine the dr and that fine would show up in the state's database and be publicly available. Not good for ratings. At most, the dr could lose their license after an administrative hearing and appeal.

If a dr wanted to, she/he could complete an application for IRB review of a study such as the one we have mentioned. The Board, normally composed of one's peers in a field, would pour over the application and endeavor to ensure that privacy was protected. It is possible to do this but very time consuming and labor intensive. I have done 20 or 30 IRB applications. I have to do this even if all I want is to look at a grade profile for trends, or talk to a group of students, or even , say govt. officials.

I know I signed a HIPPA privacy statement but don't recall signing anything that said my info will be shared. Maybe I just don't remember it.

I have a list of things I want to discuss with my gyn (the vulvar skin specialist who left the group with the promise of returning with her own private practice). The orphan drug act was one of them. Surely there must be history re this disease that we know nothing about.

I guess it will take an aging movie star to be diagnosed with LS for studies to be funded.

So funny Beverly. No aging movie star would want to admit to having this dreadful condition.

Well, didn't Farrah Fawcett go public re her fatal anal cancer? So it's possible.

That is predominately caused by the sexually transmitted human papillomavirus for which there is now a vaccine.

You're right beverly.

For some reason I am convinced the PRP shots can probably help us more than anything. Rosie has never responded re if hers were given by a gyn or if a particular protocol was used other than the usual O-Shot. The gyn I spoke with said there was.

Changing the course of AI disease via diet and supplements is probably a long if not impossible road. I like the idea of strengthening the area with healthy tissue rather than waiting for further deterioration.

Hi Beverly,

I would need to see and hear positive results on the PRP shots before I consider it. I would want to know how long it lasts and if it does deter further deterioration. Geeze, what an awful spot for LS.

Ya, well, unfortunately no one asked us if we were open to the idea of getting it there. Getting the oral version (LP) doesn't sound so great either.

*While useful, steroid creams may have serious side effects that include thinning of the skin, fungal infections, and lowering the immune system.

Platelet-rich plasma (PRP) is a platelet concentrate that helps to speed up tissue healing, without serious side effects, in a very wide range of medical conditions such as diabetic foot ulcers, muscle injury, tendon injury, and in a variety of cosmetic procedures. The PRP works because of its high level of proteins that help with wound healing. It is also apparent from the majority of published studies that PRP therapy has minimal risk of scar tissue formation or significant bad side effects.

from the NIH

Given that PRP works, in part, by replacing proteins, I wonder whether it would help if we increased our protein intake substantially? How many of us with these conditions are vegetarians?

Surely not I! Can't live without serious protein intake, particularly at the start of the day. Meat, chicken, fish, tofu, eggs.

That is a good question eggbiscuit. Who can we ask, a nutritionist? I'm becoming more vegetarian each month, but I do like fish, seafood and chicken. Haven't had beef in 30+ years. I don't eat any dairy whatsoever. I'm allergic to it.

Journal article from the Lancet, 2003 showed researchers in Britain found abnormal accumulation of proteins in tissues and 67% of skin samples tested positive for immunoglobulins, especially version G, thus practically confirming the AI connection. Authors did not say it has anything to do with protein in diet, however. They think skin biology is messed up. Trauma was mentioned but they said LS was not necessarily induced by trauma. Authors found patients with LS have an antibody to a certain type of protein (extracellular matrix protein ECM1) and they think this antibody reaction to the protein screws up the skin synthesis. My two cents for today....

I'm afraid I'm not understanding that. Sounds as if we should be avoiding protein if it is abnormally accumulating in tissue. Where else would protein come from if not diet? Or does this mean protein is not being properly broken down and somehow ending up in these skin samples? Way out of my element here.

If LS people have an anti-body, then this should confirm the classification of AI, correct? So why are we still being told it is "thought to be AI"?

Tried looking up that protein. Definitely in over my head, but I did see it's also involved in heart issues.

Protein is the essential element in tissue repair. No protein, no repair. What I gathered from the article was that BECAUSE people have this antibody, the extra cellular matrix protein cannot get to where it is going to do what it is supposed to do and that's why the skin gets lichenified. Have to continue the research but I am going to continue to eat enough protein because I have seen what happens to people who do not get the required amino acids.

HI , all and Thanks eggbiscuit for posting this. Can you please post the article title? I'd like to share it with my cardiologist turned integrative Doc who is a true researcher. Is there name to the type of antibody test that we should ask about?

THANKS, OH and hi everyone, I"m back; I had such a great long weekend with my daughter and 3.5 year old grandson and son in law. so fun...

Nancy- the title is "Autoantibodies to extracellular matrix protein 1 in lichen sclerosus." It appeared in the Journal, LANCET. 2003 Jul 12; Vol. 362 (9378), pp. 118-23. Oyama, et al. were the authors.Lancet is considered an excellent British journal.

I'd start with thyroid peroxidase (antibody) test and then do the Immunoglobulin G series. If your function med doc says where the heck did you get this stuff, tell him/her you have a friend who's a PhD and been teaching health policy for 30 years.

Thanks for this. Giving this info to my primary care.

OH, thanks, but not to worry, Dr. Bailey is great - really, he might already know this stuff; but it's so nice to have a doc who knows I like to understand. I bring him things all the time and enjoys disabusing me of my laymans ignorance with a smile! I've already had the TPO test, he is the one who taught me about the issue with other docs not ordering it and me telling the other peeps here for a long time now, to get their docs up to speed.

I don't know about the immunoglobulin G series.

what really interests me about the ECM-1 that you mentioned, upon looking it up I see that it is associated with breast cancer, thyroid cancer, heart issues - all of these are in my family heritage! It might be good to find out if I carry that particular antibody - though I don't know what I could DO about it to save my daughter or grandson from future problems?

I'll ask for these two tests in September at my next check up (if he hasn't already done them and I just don't know abut it). smiles