Lesley Posted December 18, 2009 Share Posted December 18, 2009 (edited) Those of you who have been around for a couple of years may remember a thread asking if anyone had come across a set of symptoms which my 9 year old granddaughter was displaying.........mostly frequent dislocations of most of her joints - thought you might like an update. After nearly 3 years, many, many visits to A&E (hours and hours of waiting), tests and appointments, time off school for appts. physio after each episode of dislocations........ ........having to cope with a primary school that was unhelpful and disbelieving, classmates who thought she was a liar causing increased bullying then on to a secondary school which has been so helpful......and hospital staff who must have wondered if we were all child beaters We've recently had a family visit to a geneticist and Lauren has had the diagnosis we need to be able to take things further and get the help she needs. She has EDS type 3 (Hypermobility) which is a genetic collagen defect, and the research into the family medical history shows that quite a few of us have it with varying degrees of severity and that it has been passed on by me ( ). It has been like a big jigsaw falling into place. It's been a difficult few years for Lauren and she copes very well. We all have more tests to come but it is so much easier to be able to put a name to all the problems. Here's to an easier 2010!! Edited October 2, 2011 by Guest Quote Link to comment Share on other sites More sharing options...
Cinnamon Posted December 18, 2009 Share Posted December 18, 2009 What a relief for you all. I hope you have a great Christmas now you have the answer you all needed, & are looking forward to a brighter 2010 Quote Link to comment Share on other sites More sharing options...
ClaireG Posted December 18, 2009 Share Posted December 18, 2009 I'm so pleased she has a diagnosis Lesley Quote Link to comment Share on other sites More sharing options...
Egluntyne Posted December 18, 2009 Share Posted December 18, 2009 It must be a huge relief to know what you are dealing with. Let's hope Lauren has a better year in 2010. Quote Link to comment Share on other sites More sharing options...
Snowy Posted December 18, 2009 Share Posted December 18, 2009 What a huge relief Lesley - at least you all now know what you are dealing with which makes things a bit easier to manage! xxx Quote Link to comment Share on other sites More sharing options...
Joojoo Posted December 18, 2009 Share Posted December 18, 2009 That must be such a massive relief for all of you. I know from my own recent experiences how it feels to finally have a diagnosis after waiting such a long time when you know that something is wrong. Keeping everything crossed here that Lauren gets the treatment/help she needs now. x Quote Link to comment Share on other sites More sharing options...
SarahJo Posted December 18, 2009 Share Posted December 18, 2009 Good news indeed Lesley. After all the negativity you can all move forward now and with some degree of knowledge into Laurens condition. Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted December 18, 2009 Share Posted December 18, 2009 Excellent news . Let's hope it makes getting the help and treatment she needs much easier . She sounds like a very brave young lady . Quote Link to comment Share on other sites More sharing options...
Redwing Posted December 18, 2009 Share Posted December 18, 2009 That is good news that there is a diagnosis for her after all that uncertainty Fingers crossed that things ease for Lauren now she can get proper treatment Quote Link to comment Share on other sites More sharing options...
ubereglu Posted December 18, 2009 Share Posted December 18, 2009 At least you've finally worked out what it is and that makes life somewhat more certain and helps. Quote Link to comment Share on other sites More sharing options...
Clur Posted December 18, 2009 Share Posted December 18, 2009 Thanks for posting this. I have hypermobility and my daughter is starting to show signs - I had no idea there was a possible genetic link. As I've got older I don't get dislocations (well, I didn't get full dislocations, but joints popping in and then out again) and have been told exercise and keeping fit to strengthen the muscles to support the joints helps. Sadly I'm overweight and unfit, so there's my New Years resolution....! Took me about 15 years to be diagnosed, so I feel for her. It's a relief to know that it's not hyperchondria as the doctor made me feel a bit round the twist Quote Link to comment Share on other sites More sharing options...
chick wiggle Posted December 18, 2009 Share Posted December 18, 2009 Its amazing how much it helps just to have a label for whatever it is you are suffering. Once you know what you are dealing with somehow makes it easier. good luck to you and your granddaughter and family. Heres to a much better 2010 Quote Link to comment Share on other sites More sharing options...
Shirl Posted December 18, 2009 Share Posted December 18, 2009 Great news Lesley. Now you can move forward with a bit more knowledge. I hope your grandaughter's condition is stabilised. Quote Link to comment Share on other sites More sharing options...
docsquid Posted December 18, 2009 Share Posted December 18, 2009 You must be relieved to get this diagnosis, which is difficult to make, particularly because different members of the family will be affected to different degrees. At least now you have the diagnosis you will get the right help! Quote Link to comment Share on other sites More sharing options...
Jules. Posted December 18, 2009 Share Posted December 18, 2009 That's really good news about the diagnosis. Quote Link to comment Share on other sites More sharing options...
Chook n Boo Mum Posted December 18, 2009 Share Posted December 18, 2009 Congratulations on the diagnosis ........a friend's son has HM & sometimes when I forget he turns his arms in the strangest way over his head & behind his back.........quite unnerving & stomach-churning which he finds very amusing Sha x Quote Link to comment Share on other sites More sharing options...
theherd123 Posted December 18, 2009 Share Posted December 18, 2009 It's been a long time coming Lesley and I'm so pleased you now have an answer, that must be an amazing relief for you all. I should all have an easier future with regards to treatment now you know what you are battling with. Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted December 18, 2009 Share Posted December 18, 2009 Full steam ahead then - it's the not knowing that's the worst - now you all know and your granddaughter can get the proper treatment. Quote Link to comment Share on other sites More sharing options...
AnnieP Posted December 18, 2009 Share Posted December 18, 2009 Lesley, I am so pleased you finally have an answer to the puzzle. Now to look forward to getting to grips with what it means for you all and what can be done to help! Best wishes for 2010! Quote Link to comment Share on other sites More sharing options...
sadietoo Posted December 18, 2009 Share Posted December 18, 2009 I'm so pleased you have a diagnosis. Knowing what you are dealing with is fundamental to knowing how to overcome the problems... you can look forward to the new year knowing better things lie ahead now that your Grand-daughter's condition can be appropriately treatedxx Quote Link to comment Share on other sites More sharing options...
henriette Posted December 19, 2009 Share Posted December 19, 2009 After such a worrying and upseting time, it is indeed good news that you all finally have the diagnosis. I do so hope that this will now enable proper treatment and subsequently a much happier Lauren. Quote Link to comment Share on other sites More sharing options...
Chickvic Posted December 19, 2009 Share Posted December 19, 2009 Glad you finally have a diagnosis. Best wishes for her in 2010 Quote Link to comment Share on other sites More sharing options...
Seagazer Posted December 19, 2009 Share Posted December 19, 2009 I'm glad that at last you have a diagnosis and hopefully will be able to get some help for Lauren. Quote Link to comment Share on other sites More sharing options...
Karen & co. Posted December 20, 2009 Share Posted December 20, 2009 So glad Lauren has a diagnosis at last. Hopefully things will start to get better for her with and understanding of things Karen x Quote Link to comment Share on other sites More sharing options...
Plum Posted December 20, 2009 Share Posted December 20, 2009 All the best for Lauren I hope she can get some effective treatment. Quote Link to comment Share on other sites More sharing options...
