http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/feed http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/feed en-us Copyright (C) MDJunction.com. All rights reserved. Wed, 19 Jun 2013 13:56:22 -0700 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/introductions-personal-stories/10648223-hello-from-minnesota#10648223 Hi, I am Katie. I am 20 years old ( well 19 going to be 20 in a few weeks) and I have bardet-biedl syndrome (bbs). My brother, Patrick is 17 years old, and has bbs also, as well as autism. When we were younger, we were given a presumptive diagnosis of bbs, but my parents thought that we didn't fit the diagnosis. It wasn't until last summer, when my parents, brother, and I did some genetic testing, which determined that both Patrick and I have bbs; my parents just carry the genes that are a... Sun, 28 Apr 2013 15:25:18 -0700 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/introductions-personal-stories/140467-renew-to-group-and-very-worried#10232538 Maryland Department of Vital Records... Sun, 04 Nov 2012 18:26:15 -0800 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/10232501-newbie#10232501 Hi all my name is Lauren and I was diagnosed with BBS at the age of 3 and am currently 25 yrs old. I found a link to the website through google. I was curious to meet others that have been diagnosed with BBS. The only other person I know aside from myself is my younger sister nicole who is a year younger than me exactly to the day.... Sun, 04 Nov 2012 18:17:52 -0800 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/10100172-link-between-bbs-and-mental-disorders#10100172 Hello, My 32 year old daughter was diagnosed with BBS at age 7. Two years ago she was diagnosed with Disociative Identity Disorder, but things aren't adding up. It may be closer to schizophrenia. I can't find information whether there is a link to BBS and possible mental disorders. If you have any insight on this, I would apprecite a response. Thank you, Christine... Mon, 17 Sep 2012 16:14:23 -0700 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/3419573-new-to-group#3419573 Hi, My son is 10 months old and recently diagnosed with BBS. I was looking for advice on what to look for his health and future. Any advice is welcome thanks!... Thu, 26 Jan 2012 00:23:57 -0800 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/3087398-emotionally-drained#3087398 Post edited by: elizabeth30, at: 09/30/2011 06:52 PM... Thu, 29 Sep 2011 12:51:46 -0700 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/3083226-new-to-group#3083226 Hi, My daughter is 4 years old and recently diagnosed with BBS. I was looking for advice on what to look for when choosing schools for my daughter, what to expect as she gets older, and if any one knows about gene replacement therapies or studies. She has mild autism, Gross and fine motor delays, and speech delays. She is currently getting Speech therapy and Physical Therapy in her inclusive preschool program. We also pay privately for additional speech therapy. Any advice is welcome thanks!... Tue, 27 Sep 2011 17:01:14 -0700 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/introductions-personal-stories/2577260-hi#2577260 Hi - Ive just started dating a lad who has BBS, and am hoping that I can find some help wiht what to expect for the future - I dont want to ask him just yet, becuase I dont want him to think that it will make any diference to how i feel about him - it wont, I think hes amazing,and have no plans to stop seeing him - I just would appreciate a bit of an idea what to expect - hes 25 now, so is it as bad as its likely to get? things like that really.... he can be a tiny bit slow (but not badly) -... Sat, 26 Mar 2011 08:11:09 -0700 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/2505426-bardetbiedl-syndrome-videos-on-mdjunction#2517728 Hi - it's me again... I got many PMs from members asking to upload their own videos. At this point we can't add to the library . but hope we will be able to soon, we understand the importance of that! and another (not related) topic...Two weeks ago we added to the (now available on chrome too) the Groupon application that shows you the hottest daily deals in your town, every day. We received great feedback from the people using the toolbar so I suggest trying it out!!! CU roy... Wed, 09 Mar 2011 03:21:58 -0800 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/introductions-personal-stories/1846058-5-year-old-daughter-w-bbs-new-to-group#2280118 Hey! I am not sure if you remember me but we spoke in emails about this. Im open to chat whenever... Thu, 06 Jan 2011 15:06:07 -0800 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/1838499-hey#1838499 Im pretty new to all of this and im a bit all over the place at the moment. I knew something wasn't quite right when my son was just a few weeks old but i was certain he was autistic. Now after months of trying to convince doctors and health visitors that there was something wrong he has finally been refered to the cdc. The doctor there thinks he has bbs and autism which is a bit of a blow, i'd never heard of bbs before. Im struggling to get jeans/trousers and nappies to fit him, if anyone can h... Sun, 22 Aug 2010 01:53:56 -0700 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/introductions-personal-stories/1722808-hello#1722808 I have a three year old daughter and an 11 week old son with BBS. Dose anyone know anything about autism with BBS. My daughter has autistic behavior. My daughter's diagnosis with BBS was just confirmed, when she had an ERG a couple months ago. When she was born she was diagnosed with MKS. I've been trying to find out as much as I can about BBS.... Wed, 21 Jul 2010 13:16:07 -0700 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/593601-hello#593601 My 11 YEARS OLD SON HAS BBS, WE KNOW SINCE HE HAVE 7 YEARS, I'M FROM PUERTO RICO. I THINK THAT ONE PROBLEM IS THAT THE PEDIATRICIANS DON'T THINK ABOUT THIS GENETICS CONDITION WHEN THE CHILD BORN, BECAUSE MY SON HAD 6 TOES IN BOTH FEET AND IN THE HAND, UNDESCENDET TESTICLE AND OTHER AND HE NEVER TOLD ME ANYTHING, AND THAT'S THE 1ST SIGN. I ASK, BUT HE SAID THAT THEIRS A LOT OF PEOPLE LIKE THAT. THEY NEED MORE TRAINING ON GENETICS CONDITION THANKS FOR LISTEN ;)... Wed, 17 Jun 2009 17:40:36 -0700 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/39896-reim-new#87638 Hi I belong to yahoo groups for BBS. Its a wealth of information as all the kids are different ages but a lot of our experiences are the same. Temper tantrums being a theme lately, I have had some good advice on how to deal with Jacks over reaction to certain situations. Most kids have delayed development and speech. They also can have eye sight/kidney/obese problems from and early age. Good luck I find being a Mum to a BBS kid daunting but I hope you find your job rewarding. Camill... Fri, 02 May 2008 10:15:01 -0700 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/59068-reautism-in-bardet-biedl#87265 Hi Camilla, My son is also 2 but has not yet showed the behaviour side of BBS. He only mastered walking when he was about 20months old so when we are out and about he is always strapped into his stroller which makes it a lot easier to get around and get things done. BBS has so many different symptoms and what I've found is that is differs greatly between people who have it. Does Jack have other symptoms of BBS? Bryce's weight and extra fingers and toes are what originally had the Geneticist t... Thu, 01 May 2008 14:36:42 -0700 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/37065-son-with-bbs#37065 Hi, my second son was diagnosed with BBS at 10months old. When I first found out, I researched BBS on the internet and found alot of very good information but I didn't find anything like this. I badly wanted to talk to other people who either have BBS or knew of others with BBS. I now know a lot more about the condition and I am currently looking into IVF with PGD (Preimplantation Genetic Diagnosis) for the possibility of having another baby who won't be affected by BBS. I would love to h... Sun, 27 Jan 2008 23:28:45 -0800 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/17441-welcome-to-the-bardetbiedl-syndrome-support-group#17441 Hello, Welcome to the Bardet-Biedl Syndrome Support Group. This Support Group is a comfort place for family members and friends to share and ask questions regarding Bardet-Biedl. Feel free to introduce yourself, ask your questions and be around people who are in your spot. We'll be happy to hear your thoughts on how to make this better. Best, roy... Wed, 21 Nov 2007 03:11:53 -0800 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/17440-making-the-most-of-the-bardetbiedl-syndrome-support-group-experience#17440 The Bardet-Biedl Syndrome Support Group is full of ways to interact and share your knowledge and experience. It's your chance to be around people who are dealing with the same issues as you do and understand you best. The Bardet-Biedl Syndrome Support Group has 3 main discussion topics. You can explore them by clicking the link on the left. As this group just started we'll need people to jump start it and make it as productive as other groups on this site are. To get an idea you can visit the... Wed, 21 Nov 2007 03:11:52 -0800 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/general-support/17439-how-to-join-the-bardetbiedl-syndrome-support-group#17439 OK. The No. 1 of all No.1 questions ;-) "I can't seem to be able to respond to a post", "why can't I start a new discussion?". At the top right of any page in the support group you'll see a button for "join this group". Once you press it, you're automatically a group member and able to join the discussions. Try it ;-) now! Waiting for No.2, Any more questions? Best, Alon... Wed, 21 Nov 2007 03:11:51 -0800 http://www.mdjunction.com/forums/bardet-biedl-syndrome-discussions/introductions-personal-stories/17438-technical-stuff-related-to-the-bardetbiedl-support-group#17438 Hi , I'm Alon, nice to meet you all ;-) I'm in charge of all the technical stuff around the site and the support group. If you have any problem, want to ask a technical question or would like to suggest a new addition to the Bardet-Biedl group – please contact me (via PM). I hope to CU here a lot. Sincerely, Alon... Wed, 21 Nov 2007 03:11:48 -0800