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So thanks to a kind woman on this site, I have a Genetic doctor in California’s contact info. My problem is that I have been to so many doctors in the past and had a lot of horrible experiences and I’m not sure if I have EDS, some rare skin disease, or some form of connective tissue disorder/disease. What I do know is that my skin is far from normal and whatever is wrong with me has ruined most of my life.
I live in KS, so if I was to go to California to see this doctor to get my diagnosis, I want to be sure that she will be able to diagnose whatever I have even if it is not EDS. At this time in my life I don’t know if I would be able to handle going out there and having another doctor who can’t tell me what is wrong or that she can’t help me. So I’m really needing some advice and to hear from some people about what they would do if they were in my shoes. Thank you.
Hello,
I must have had EDS all my life but was rarely aware of it, as I wasn’t obviously hypermobile, though I could kick my leg higher than any of my friends (especially when I was 47!) I do remember that my mum could touch her fore arms with her thumbs, which is one of the signs of EDS, as you probably know but I couldn’t. My skin then was wonderful, I had no problems, except for probably a wide scar but overall I had a very young appearance for my age (so it does have it’s benefits!).Following my head and neck injury 10 years ago, it became a totally different story though. Eventually the skin on my fore arms became rough, the backs of my hands became very dry and papery, my skin would split and weep under my breasts when I had a mammogram. If I had too much sugar, my skin became very sore in places (navel and anus particularly) and could bleed. I eventually, years later developed a pendulous type belly which also became sore underneath. The skin over the tops of my ankles broke down with the pressure from my support hose. If I slept with my fingers entwined the skin would break down where any pressure was, etc., etc.
More lately I developed a sore on an abdominal scar from 20 odd years ago which, although it has almost healed (5 weeks later!) unfortunately infection has travelled inwards and caused a large solid lump in the tissue above it, so I’m on antibiotics for that. Other than these and creams to apply, I have been given no explanation as to why these skin conditions are occurring. I also have easily irritated skin, e.g my back is always itching.
I was finally diagnosed with EDS in 2010 I think it was, after many, many, many consultations (many of which were a waste of time!) I used to feel like a lone swordsman fighting a formidable foe! So, be strong, be your own advocate, research when you can, know your facts and be adamant and eventually you will break through the brick wall and obtain effective treatment.
Dr Diana’s certainly on the right track, we just have to wait for her theory and scientific papers to be adopted by the medical fraternity. Her knowledge is very broad and her theory is based upon not just her own discoveries and observations but those of equally intelligent others. Not only does it make GREAT sense but in the absence of any alternative, I doubt there’ll be much opposition.
DO NOT GIVE UP. In the meantime you have to learn to ‘read the signs’ your body is giving you and manage your condition the best you can. Rest assured you are not alone!
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!Can’t speak to the CA doctor but if you are going to fly to see someone flying to Baltimore is guaranteed to be worth the trip. I have never heard a bad word about Dr. Francomano…. from anyone.
If flying to see a Doctor, I would choose Baltimore also. Unless the recommended Doctor is well skilled in connective tissue and other skin related conditions and going there is far more workable than Baltimore because you’d have things like support, a free place to stay and transportation. I’d honestly only pick someone other than Dr Francomano because financially it was impossible to see her. There is however an extremely long wait to get in. I’d jump at the chance to take my Daughter for a consult with her if I could.
If flying to see a Doctor, I would choose Baltimore also. Unless the recommended Doctor is well skilled in connective tissue and other skin related conditions and going there is far more workable than Baltimore because you’d have things like support, a free place to stay and transportation. I’d honestly only pick someone other than Dr Francomano because financially it was impossible to see her. There is however an extremely long wait to get in. I’d jump at the chance to take my Daughter for a consult with her if I could.
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