By Linda on Thursday, June 20, 2002 - 12:24 am:

My PHYSICAL therapist has given me my life back!! She knows more about EDS than any MD and has gone beyond the call of duty by making me a homemade hip brace. she has helped find away fo me to keep almost all my joints from dislocating and educated my OT AND SHE IS HELPING me with my fingers. She was a gymnast so she's an awesome taper.she loves to sew and is creative thus her brace making abilities. she has also worked on ballet posture so i dont put strian on my hips and knees. Most of all she has educated me on my problems. She is so understanding about EDS just because she loves puzzles and challenges.
I feel she could help anyone with EDS because she validates us physically and psychologically. she has a private practice in LOS ANGELES AND also works out of VERDUGO HILLS HOSPITAL IN glendale ,CA
HER NAME IS CATHERINE Danelski . the OT THERE IS maureen. THEY ARE BOTH MIRACLE WORKERS. i HAVE TROUBLE TYPING BUT FEEL FREE TO EMAIL WITH ANY QUESTIONS.

By Bree on Thursday, June 20, 2002 - 09:21 pm:

Can you describe how the hip brace works? I've been looking for some sort of hip brace, toe brace, etc., but haven't come across anything at all.

By linda on Saturday, June 22, 2002 - 08:45 am:

Actually after some discussion about fabric since I CANT TOLERATE underwear on my tender hips I FOUND SOME rayon spandex shorts at the trashy lingerie store. I KNOW IT'S CRAZY and it started out as a joke but they had a ton of things there that could hold my hips in. I dont mean victoria's secret or fredericks but I happen to live near HOLLYWOOD BLVD and it's more like what those dancers wear. These shorts provide propioception for my hip muscles so they can sense when my hips are about to dislocate . she then sewed these two ace bandage wraps with velcro on the end to the crotch area . she sewed them diagonally towards the back. the velcro is attached at the back depening on how much tension is needed to keep my hips from falling forward. This took months of work and thought. she started out sewing the strips of ace wrap onto a pair of undies but tight underwear dislocates my hips. these dancer shorts are snug but not tight its intersting cause if i dont wear them i chance dislocation.She also found a company that sells a hip brace that look like bike shorts with a bunch of straps going every whcih way. they also cary a shoulder brace that lookslike a half t shirt with straps to hold your shoulder in. hope this helps. I was quite a challenge with my clothin issues. she had thought about suspending straps from my shoulders as an anchor for my hip straps.
luckily i found the shorts!!!! We laugh that something that was designed for strip tease fashion works a a miracle brace for me!!!

By LINDA on Saturday, June 22, 2002 - 08:53 am:

Oh for your toes they have these foam bandages . you can find them in DR Leonard's catalogue for $5. they also come in a gel form that i have seen at regular drug stores. LOOK IN THE FOOT SEFCTION also try looking in the sammons preston catalogue. i got lucky .I went to the mall this week and saw a Horton converse pharmacy and wonder of wonders they had ONE PACKAGE OF FOAM TOE bandages!!! i USE THEM ON MY FINGERS AS WELL TOOK KEEP THOSE IN PLACE!

By Tara Thompson on Thursday, July 04, 2002 - 07:49 am:

I have a quick question about all of these brases and things...I am a 35 newly diagnosed eds type 3 woman and have been on ssi'ssdi for more than ten years because of the joint problems. (Boy was it a relief to find out I had a tangeble problem and not just a cronic complainer about pain. Anyway, they just put me in a wheelchair because of all the nerve damage problems and pain and I was wondering how you guys find eds docs and how do you pay for the special braces and such. I only have my ssi/ssdi and I live in the funky state of Missouri (US)that I have to fight just to get anything at all. There are no resourses here in the state for eds. I guess I have been living with all the pain for so long that I can't understand what it is like not to have any. I know my dr. is a good person and a godsend to finally put a name to all the things I thought were just bone related, but I would feel like such an idiot if I actually sat down and told him every thing that hurts or bothers me at one time. How did you all deal with it and now look like a hypoconreac(SP?)Sorry this was so long

By bree on Thursday, July 04, 2002 - 09:54 pm:

Hi Tara,
I've also got a whole bunch of annoying symptoms that I've never had the time/guts to talk to my docs about. If I try, they tend to get side tracked on some things, and to forget about others. I also feel guilty about taking up time, too. I've also noticed that the docs tend to forget how much pain I'm in - I recently mentioned to my doc that I had to go see social security in the city, and he said "is it really that hard for you to get around?". None of the docs I've seen seem to know anything about HMS/EDS, and so I've had to make do with the best 'non-experts' I can find. In terms of the money thing, I do have trouble there, as I'm on a government sickness allowance, but I suspect things are a bit cheaper because I live in Aust. We still have some semblance of 'free' healthcare here (although the government is trying to get rid of it). I've also got private health cover, and I can sometimes get a rebate on orthotics/braces/drugs from that. Another thing that helps is I've got a really kind chemist that I go to, and he always gives me the best price he can on any drugs/devices I buy from him - his discounts alone probably save me $500AU a year. There's also a disability/accessability devices charity I've heard of here - I'm sure there's similar things in other countries - and I'm thinking about asking them if they can help with getting a low-cost hip-brace. It really annoys me that people like us have to "fight just to get anything at all" as you say. I doubt a healthy person could ever understand how much all this "fighting" takes its own told on our health.

By Gail Ludvigson on Friday, September 27, 2002 - 10:36 am:

I've just begun having problem with hip dislocation and believe I have HMS. Where can I get a hip brace? I live in Seattle, but would be glad to buy online.

Also, anyone know about exercises for hip subluxation (dislocation)?

By peter on Monday, October 07, 2002 - 04:23 pm:

Bree mentioned the high cost of drugs, braces etc in Australia. I have worked around this problem by going directly to a wholesaler (I live in Melbourne) for my tape, bandages, etc. I save about 40% or more off retail. Generally, I buy tape in bulk (30 roll box). The company I use is OPC (phone 1800 809 635). Give them a call.

Peter

By Sharon on Monday, October 07, 2002 - 07:28 pm:

Peter and Bree.
I too am an Aussie with HMS/EDS and having all the problems that go along with it. You can get your braces for free or very cheap by going through a public hospital physio or rehab doctor (So I am told, I have just started see a rehab doc at our local public hospital (I live in Canberra)). I am unable to use tape at all as my skin basically fall apart(I am allergic and within a couple of hours my skin is open, raw and weeping). I have many braces (worse luck)( and at present am in a wrist and thumb cast as the doctors at A&E think I may have broken my wrist or have really really bad tenosynovitis (Again). I will wait and see what the bone scan says. Red Cross hires out equiptment for free or very cheaply with letters from doc for up to 6 months I think. and there are other organiseations that can help to. I also have private health insurance (and am on Workers Comp)so I don't get the discount for pensioner/ HCC holder (Worse luck) and my meds can get very very expensive (luckily W/C covers some of them). As well as HMS/EDS I have RSD, HLA B27+, JRA, and much much more.
Feel free to email me as it is great to meet other aussies with HMS?EDS (Not great that we have got it but great to know we aren't alone)