Bardet-Biedl Syndrome

Stories of Bardet-Biedl Syndrome

STORY

VIEWS

BY

Hi my name is Ryan, im 14 years old and have BBS1. My main struggles are my weight and my vision, i also have been diagnosed with Autism and MR. I got my genetic diagnoisis of BBS about 2 years ago. I have night blindness and have n...

857

1/26/16, 4:47 PM by Ryan Forsblade

ORLANDO

Have a 20 year old son with the syndrome. He is BBS 10, no health issues, mild obesity and his vision is almost all gone.

712

12/30/15, 11:57 AM by Ingrid

MARY'S STORY

Please register your BBS loved one in CRIBBS! [email protected] We have a Center of Excellence for Treatment of BBS, Located at the Marshfield Clinic, contact the director, Dr. Bob Haws, [email protected] for ...

658

12/30/15, 3:32 PM by Mary

BARDET-BIEDL NETHERLANDS

Our oldest son has Bardet-Biedl Syndrome (BBS). We are setting up a family foundation in the Netherlands for BBS. Contact us: [email protected]

621

6/16/19, 9:19 AM by Bardet-Biedl Netherlands (Bendert & Nienke)

HELLO!

Hello, my name is Bea. Maried with my great and loving husband, Marco. Together we have three children. Tamara, Bart and Bas. Bart en Bas are twins. Tamara en Bas have BBS. It was great to see this map with all this people with BBS! I could sho...

605

1/27/16, 9:20 AM by Tamara en Bas Brinkman (30 augustus 2000, male)

QUESTION

VIEWS

BY

3 people with Bardet-Biedl Syndrome have taken the SF36 survey. Mean of Bardet-Biedl Syndrome is 1893 points (53 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

There are 113 people in the Bardet-Biedl Syndrome map

What is the life expectancy of someone with Bardet-Biedl Syndrome?

3 answers

Celebrities with Bardet-Biedl Syndrome

2 answers

Is Bardet-Biedl Syndrome hereditary?

4 answers

Is Bardet-Biedl Syndrome contagious?

4 answers

Bardet-Biedl Syndrome top 25 questions

Stories of Bardet-Biedl Syndrome

STORY

VIEWS

BY

857

712

658

621

605

Tell your story and help others

Tell my story

View more