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 | Posted On: 11/30/2008 At: 2:00:05 PM |
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Mystery Diagnosis on Discovery Health Channel is going to have a show featuring Ehlers-Danlos Syndrome (EDS) on December 8. Not sure of the time, but I am going to do my best to catch it. My son and I have EDS and my husband likely has it. My son's EDS is the worst in the family, but not nearly as bad as it could be (thankfully).
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my husband joe has ehlers-danlos [type 3].
up until 2000, it didn't affect him much and we didn't even know he had it. in 2000, it hit him like a ton of bricks and took over 4 different doctors in 4 different disciplines and 3.5 years to finally find one who knew the symptoms and could diagnose and treat. for us, it truly was a mystery condition. currently, provigil gets joe through the day but we're still hoping for a magic bullet.
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Cheryl
aka EV aka MUT
aka CSchell
Banking off of the North East wind,
Sailing on summer breeze, And skipping over the ocean like a stone.
by Fred Neil |
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This year has been my rough year. I feel old beyond my years. One joint in the back has totally lost it and often hurts. Hips were bad, but doing much better now that I have a lift in my right shoe. My little guy is wayyyyyyy too bendy and I expect him to have problems forever. :( My husband keeps thinking our son will get better, but I don't see it happening.
I can retire when I'm 55 (better if I go to at least 56), but I'm not sure I'll be able to hold out that long. I just expect to have a really hard time convincing Social Security that I'm disabled though. EDS is too rare with too few people having any clue about it.
EV, it was through you and 'ren that I figured out what was wrong with my son and was lucky that the genetics doctor at Childrens was willing to entertain the thought and sent me to another doc to confirm.
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| Posted On: 11/30/2008 At: 10:23:01 PM | | | Reply Link |
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lash...when you described his symptoms, i had no doubt it was eds. glad you've found good care for him and you.
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Cheryl
aka EV aka MUT
aka CSchell
Banking off of the North East wind,
Sailing on summer breeze, And skipping over the ocean like a stone.
by Fred Neil |
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| Posted On: 12/01/2008 At: 09:13:56 AM | | | Reply Link |
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Hiya ladies,
I hope that the show takes more than a 'freak show' look at EDS and its varying severity and forms and possible/probable complications,
Firstly, sorry to hear that others are having difficulties as a result of EDS. As you may know I have EDS as well as my paralysis and in actual fact the two are probably linked with me. Not to scare anyone though as I have very very severe EDS. To put it in perspective, I just dislocated my fingers, thumb, shoulder, elbow and my hips are out period and subluxed some ribs..and that is just in the last 20 minutes or so. As a child I had multiple injuries and incidents but became so paranoid that I hid them. In the beginning when mum took me to the drs they said that b/c I was a dancer and gymnast & was so "bendy" there couldn't be much wrong with me.
In my case, I have complex EDS which is not just Hypermobile type but crosses almost all of the categories. As a result it effects everything from joints to blood vessels. Thankfully my son has hypermobile type only we think at this point altho he has issues with his hips and knees/shoulders and dislocates a few times a week.
I didn't get diagnosed until the shit hit the fan during and after pregnancies (when I also had a negligent dr set loose on me, but EDS is a good loop hole for them). My issues were put down to Hormones and although they are right in some ways, as EDS is affected by Hormonal influence and this is why women are generally more severely affected or have complicated aiteology even in 'straight forwards' cases..... they are wrong in another..Hopefully any anxiety re my situation seems to provoke in other EDS'ers will be soothed when I say that I am at the very extreme in terms of seriousness - my specialist Dr said I have the worse hips etc etc he has ever seen....etc. So I am not the norm.
... or please check out my blog for some idea on how eds/my neurological status affects me.
Saying all this, no matter how severely you or the one you love is affected it is still scary, debilitating and seems to decimate all - especially when there are 'flares' or 'triggers'. As a mum I worry myself sick about my son who at 6 has quite moderate EDS. last night he almost choked ( another risk of EDS..) So I can relate to you LASH. What I will say is that knowledge is everything. I can protect and prevent some of the extra risks which I unfortunately couldn't be protected by (eg I did contact sports, gymnastics etc etc)..If you ever want to talk, I am here. Please contact me here or at my blog.
Thanks for reading - if you got this far!
If someone can let me know what/how they cover the EDS topic, I would be grateful. Thanks
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[ Edited by: Serendipity on 12/09/2008 9:02:40 PM ] |
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Better to do something imperfectly
than to do nothing flawlessly.
-Robert H. Schuller
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| Posted On: 12/01/2008 At: 11:48:17 AM | | | Reply Link |
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sounds interesting! i'll try to watch it, too.
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"All that is necessary for the triumph of evil is that good men do nothing."
~Edmund Burker |
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They did a rather nice job on the show. There was only one spot where they showed circus people with really stretchy skin. I believe the real reason for that was the woman profiled did not have stretchy skin. I don't think I have very stretchy skin and I do not have particularly bendy hands and wrists, but I have very bendy arms and legs. Hormones really do play a big part in it. I got much worse and way more bendy after my hysterectomy. I now sleep on the couch with a board under the cushions because sleeping on a bed darn near cripples me. The back and hip pain are terrible after sleeping in a bed. Even tried putting a board under the mattress, but it didn't help. Doc suggested a sleep number bed for me and my husband because he needs a softer bed than I do.
Anyhow, back to the show. I thought it was well done and I'm hoping to get a copy of it to show to my husband, gym teacher and school nurse. The woman on it has had about 40 surgeries to stabilize joints. I have a very mild case compared to her and I hope to keep it mild by being careful with myself. I'm trying to keep my child from having too much trouble, but he has a worse case than I do. He's dislocated a hip and elbow, but suspect he subluxates and doesn't realize it. It's almost painful to watch him lift his arms above his head because it looks like the arm bones spin out of the shoulder sockets. So my husband thinks I baby my son, but I just want him to have the best life he can. My husband thinks our son will "grow out of it!"
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Quote:
Originally posted by LASHB
They did a rather nice job on the show. There was only one spot where they showed circus people with really stretchy skin. I believe the real reason for that was the woman profiled did not have stretchy skin. I don't think I have very stretchy skin and I do not have particularly bendy hands and wrists, but I have very bendy arms and legs. Hormones really do play a big part in it. I got much worse and way more bendy after my hysterectomy. I now sleep on the couch with a board under the cushions because sleeping on a bed darn near cripples me. The back and hip pain are terrible after sleeping in a bed. Even tried putting a board under the mattress, but it didn't help. Doc suggested a sleep number bed for me and my husband because he needs a softer bed than I do.
Anyhow, back to the show. I thought it was well done and I'm hoping to get a copy of it to show to my husband, gym teacher and school nurse. The woman on it has had about 40 surgeries to stabilize joints. I have a very mild case compared to her and I hope to keep it mild by being careful with myself. I'm trying to keep my child from having too much trouble, but he has a worse case than I do. He's dislocated a hip and elbow, but suspect he subluxates and doesn't realize it. It's almost painful to watch him lift his arms above his head because it looks like the arm bones spin out of the shoulder sockets. So my husband thinks I baby my son, but I just want him to have the best life he can. My husband thinks our son will "grow out of it!"
Mmm Interesting..I would like to see it....
Its sad re the surgery that woman had. Very importantly...and sadly most Orthos don't know that In severe EDS cases Specialist advise (and I see a world renound expert) that surgery isn't advisable . You see it a) doesn't last as the collagen stretches out again and b) stabilizing one joint causes differing pressures in the surrounding ones which equal more dislocations and need for stabilization there...and so the vicious circle begins......
I have literally hundreds of dislocations a day....My fingers and hands, elbow, shoulders, ribs, lower limbs and hips vertebrae and yadda yadda dislocate with NO TRAUMA at all..just sitting they pop..so add a trauma and its unbelievable..
My back is the scary one for obvious reasons and what already has gone as its like its unstacking most the time but the only thing they could do I was told was to rod and fuse and that would cause more issues (as mentioned above) and I would lose function in other ways then. My latest ortho wanted to fuse both hips in a sitting position as he felt that was the only solution to the spasms/dislocation/unbearable cycle, but not going that route due to the complications I would invariably get due to my internal organ involvement so I can relate to you Lash, and if you ever want to chat let me know...As for sleep - I don't lol...just zonk every so often.. I had issues with dislocations and injuries as a child and b/c I was a gymnast and danced it was thought that I was too well to be fecked up.. My major dislocations ( hip repeatedly) started early on and got worse..but as I could reduce them even then It was deemed that they must have been impressive band snaps even though I had xray proof. Then I got scared when the hosp asked if someone was hurting me as my explanations wouldnt have caused such injuries in the normal person! and I wanted to be a nurse (bad idea in retrospect and why I did cardiology as small unit and a lot of sitting!)....Later it would take documentated episodes for ordinary run of the mill drs to believe me ( had to have neuro/specialist and specialist PT).
I feel lucky as here in tyhe UK we are the central hub for knowledge on EDS and its many types...although at the moment things are complicated in London I hear.. My blog has info on how my eds and paral affects me so take a look if you want
I prob said b4 but my dad had many problems which were put down top a car wreck..and he was MArfan like ( had many symptoms etc) and the accident was a red herring..As for our kids, our daughter is a mystery at the mo..as she seems less EDS like than our son (which is good and I feel horrid saying that - but males are less affected generally than females) yet is having issues ( such as labial tearing something I have always had, and skin issues etc) and our son dislocates something every week sometimes a few things. He has tons of subluxations and writing is difficult due to his finger/thumb instability so he has to pace and use a computer a lot * Both my kids are in gifted and talented so he can get frustrated with his hands etc..Je dislocates his shoulders just by turning in bed and has always dislocated them watching a dvd or something..His hips and knees are the worst at the moment though and he is having a lot of dislocations and the fatigue. He is likely type III alone, but I cross over almost all the categories, having features of vascular but thankfully not aneurysms as far as we know...As for babyin g him yeah I do a bit but I think thats a mum's job and part of looking out for them ya know? I mean if we don;t intervene pur boys ( mine and yours) may end up in a worse situation. For eg my son may end up with more micro traumas adding up to osteo and dislocations 24/7 like me..I don;t tend top worry about the Neurological impact that I have had as being bendy can be good and wqrd off it..I was just so unlucky and prob due to the fact that mine is so global and the incidents that occurred. A few years ago our son fell 10ft onto his head and we were told that he was lucky and because he has so much spinal/vertebral movement that the impact was absorbed and likely the vertebral shifting moved out then back instead of staying out etc.,,He is having a lot of respiratory issues due to a floppy airway etc..
SOOO if you ever want to chat let me know! Its stressful when its your child. I hate to think how my mum feels with what happened to me. So I think that being protective and fighting the corner for them is hard to balance right and it can get so overwhelming at times....I do worry that my son will assume that he will end up exactly like me and I try and inform him of the reasons we do certain things and regularly say things like "having different collagen collagen be a plus" and cite stuff like beautiful skin he has and the like as I am acutely aware that he must be confused and anxious. he doesn't know that its a genetic fuck up but he does know why he has to sit on a special cushion in class and why he falls over his own feet when his hip dislocates....usually when running and why ......u get the drift I am sure.
Anyway I hope that I don;t scare you! I have had many times talking to other EDS'ers online and at appointments and they have been freaked out by me and how bad my EDS is.I guess I find it hard to fit in with most of the EDS ers as I am at the extreme although I havce a good irl friend ( we met thru EDS) and she has pretty bad EDS too..and she hasn't wound up with the neurological/par so thats reassuring - yet I worry that I don/t have anyone to relate to here ...but I guess its becoming clear that I do..:)
I hope that this reads better than I think..my braces keep fecking up what I am writing ( voice recog wont work with my accent!) and my mind is sooo jumbled..
HUGS to you and yours,
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Better to do something imperfectly
than to do nothing flawlessly.
-Robert H. Schuller
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My son also has sensory issues which the EDS makes worse. We've had him in OT for almost a year now and he's doing better. We did almost a year of PT to help strengthen him which really helped. I don't like where he goes for PT though so I need to see if he still need PT and if he does, I might need to find a new place. If they'd stick to one PT and not pass him around, it would help. I've voiced my concerns, but they don't listen. I had the head PT look at my son and say, "well, he looks pretty healthy to me." I thought (and should have said aloud) "did you even read the chart??????" Yeah, he looks healthy until you look closer and see the knees that bend backwards and sideways, the arms that bend wrong, etc...
Yeah, one advantage to the EDS is that I have nice skin. :) I get compliments on how smooth my skin is. Not sure if it will be that way forever, but I'll take it for now. 
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