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Bardet-Biedl Syndrome prognosis

What is the prognosis if you have Bardet-Biedl Syndrome? Quality of life, limitations and expectatios of someone with Bardet-Biedl Syndrome.

Bardet-Biedl Syndrome prognosis

Bardet-Biedl Syndrome Prognosis


Bardet-Biedl Syndrome (BBS) is a rare genetic disorder that affects multiple systems in the body. It is characterized by a combination of symptoms including obesity, vision problems, kidney abnormalities, intellectual disability, and various other physical and developmental issues. The prognosis for individuals with BBS can vary widely depending on the severity of their symptoms and the management of their condition.


Vision Problems: One of the most significant features of BBS is retinal degeneration, which can lead to progressive vision loss and blindness. The prognosis for vision problems associated with BBS is generally poor, as there is currently no cure for retinal degeneration. However, early detection and regular ophthalmologic monitoring can help manage the condition and slow down the progression of vision loss.


Obesity and Metabolic Issues: Obesity is a common feature of BBS and can lead to various health complications such as diabetes, high blood pressure, and heart disease. The prognosis for obesity-related issues depends on the individual's ability to maintain a healthy lifestyle, including a balanced diet and regular exercise. Early intervention and ongoing support from healthcare professionals can significantly improve long-term outcomes.


Kidney Abnormalities: BBS can also affect the kidneys, leading to renal dysfunction and the potential need for kidney transplantation. The prognosis for kidney involvement in BBS varies depending on the severity of the renal impairment and the availability of appropriate medical interventions. Regular monitoring and early intervention can help manage kidney-related complications and improve outcomes.


Intellectual Disability and Developmental Issues: BBS can cause intellectual disability and developmental delays. The prognosis for these aspects of BBS depends on early intervention, access to appropriate educational resources, and supportive care. With proper management and support, individuals with BBS can achieve their full potential and lead fulfilling lives.


Overall, the prognosis for individuals with Bardet-Biedl Syndrome is highly variable and depends on the specific symptoms and their management. Early detection, regular monitoring, and comprehensive medical care can significantly improve outcomes and quality of life for individuals with BBS.


Diseasemaps
2 answers
The renal abnormalities are the main life-threatening manifestations because they can lead to end-stage renal failure and require renal transplantation. Progressive vision loss due to retinal dystrophy, together with moderate intellectual deficit (when present), behavioral anomalies, hypomimia and obesity will affect the social life of these patients.

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BARDET-BIEDL SYNDROME STORIES
Bardet-Biedl Syndrome stories
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 negative 14 i...
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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. 
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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 deta...
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Our oldest son has Bardet-Biedl Syndrome (BBS). We are setting up a family foundation in the Netherlands for BBS. Contact us: [email protected] Check our website: www.bardetbiedlsyndroom.nl
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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 show Ta...

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