BBS2
Talking with other people who have experience with BBS
Talking with other people who have experience with BBS
2 daughters with BBS10
I raised a daughter with BBS who is now an employed adult, living on her own with some coaching.
I am mother of BBS girl.
Having understanding from others
hydroxyclororquinine helps keep the porpyhrins down
Educating the medical world
Educating the medical world
Please register in CRIBBS: Clinical Registry Investigating BBS
Get on the Families with Bardet Biedl Syndrome page on Facebook and register with CRIBBS https://cribbs.marshfieldclinic.org/
She is 10 years old. She is my oldest child. Now I have 3 kids.
Knowing that there are other people like me
limit sun exposure to 15 min tops
Attending the Center for Excellence in Marshfield, WI
Attending the Center for Excellence in Marshfield, WI
BBS children make progress in many areas with therapies: speech, occupational, physical, nutrition. It's worth the time.
We love to share experiences.
Knowing the research is being done to hopefully help me one day
We are setting up a group (foundation) for BBS in the Netherlands
load on carbs day before stress and complex sugars and gatorade when in trouble