FAQ’s
Can you recommend a doctor in my area?
I’ve learned that the best doctors are the ones you trust and who are open-minded. If you know of a good doctor, or are looking for one, please join and visit the forum at We have a thread that everyone can enter and offer suggestions.
I’m not sure if I have Ehlers-Danlos Syndrome. How can I be sure?
A good place to start is the videos about the forms of Ehlers-Danlos and how to diagnose them. If you suspect that you do, a geneticist who is familiar with the CLINICAL diagnosis (not just diagnosis through a blood test) is likely the best professional to see at this time.
Do you sell any supplements?
No. I am here to help you, not to sell you. I do take some supplements and vary them from time to time (since I’m being the guinea pig for most of us!), but I strongly believe that a lack of supplements did not make us ill, and supplements will not “cure” us. They certainly have their place in assisting our bodies in the healing process, but every patient is different and must be treated so. (I do wish I had a brain cell for every person who tried to sell me supplements since I became ill. <insert your own punch line here>)
How do you fund this website and your research?
Donations from generous people like yourself help, but in no way cover the costs of my work. I’ve had one clinical trial subsidized, but all remaining trials, research, conferences, education, communication, website costs, video costs, etc. are self-funded. Like many patients (especially with affected children), much of my income goes toward health costs. This website is a labor of love that I truly believe gives my life purpose. Having said that, even labors of love are easier with financial assistance!
Can you talk to my doctor and answer his/her questions?
I am happy to arrange a consult with your doctor if your doctor is interested in doing so. My consulting fee is $150 per 30 minute consult, and arrangements for payment must be decided between you and your doctor. I do not accept insurance (remember, I am on professional disability).
Can you come and speak to our group?
I’d love to try. Please contact me at and we’ll try to work out something.