Natural Remedies for Gorham-Stout: Holistic Approaches

Is anyone familiar with Gorham-Stout, also known as Disappearing Bone Disease?

GSD (Gorham-Stout Disease) is a vascular anomaly thought to be an error in the development of the lymphatic system. As bones are routinely broken down, they are replaced with lymphatic vessels and a fibrous band of connective tissue instead of more bone. Also known as Vanishing Bone Disease, it is listed in the international directory of rare diseases (https://rarediseases.org/rare-diseases/gorham-stout-disease/ and https://www.childrenshospital.org/conditions/gorham-stout-disease#:~:text=How we care for Gorham-Stout disease).

Up until recently, it was thought to be a disease found exclusively in children, but now that more adults are reporting having symptoms, there is thought that it might even be a form of osteoporosis. Signs of the disease can vary, but for me, it first manifested as small divets or depressions in the skull I could feel with my fingers that grew larger with time. I wore hair extensions for years and thought it might have been caused by that.

My current understanding is that the diagnosis cannot be fully confirmed without doing a skull biopsy, and this is a high-risk procedure that often results in ongoing cerebral-spinal fluid leakage. It is discouraged by the doctors I have seen. Right now there is no known cure for Gorham-Stout. Current therapy is experimental and consists of a combination of bisphosphonates, interferon and an immunosuppressant drug called sirolimus. All have disturbing side-effects that seem - at least at this point in my situation - potentially worse than the disease itself. I personally have a poor tolerance of bisphosphonates, and my mother, in fact, died as a direct result of her taking Fosamax.

If anyone has knowledge of this disease and any recommendations or referrals for me to contact I would be extremely grateful. Any information at all would be helpful. Thank you.

Thank you so much for your reply, Art. I am familiar with this research and am already on melatonin and a commercially available calcium w/strontium supplement program called AlgaeCal. The research studies look very good on paper, but my endocrinologist thinks the results are too good to be true. Still, she is supporting me in taking it because I cannot take the bisphosphonates. Current GSD doctors won't administer Sirolimus without the bisphosphonates, so this is something of a sticking point right now. Also, the docs I am seeing have not been able to show me "numbers", so that I can see what changes are occurring between dexa scans. Is there any other way to detect improvement or remission? How else do they know what is or isn't working?

Hi Shana, I wish I had imfo.on your condition but I think there is something to help you. I come across Blackseed Oil.

Legend has it that it can cure everything but death.

All the best,

Gary

Used this many moons ago...it may be worth trying again. Thank you!