Living with Bardet-Biedl syndrome

Post date: 
Wednesday, 25 October 2017
Photo of Aneeba

As part of RNIB’s #HowISee campaign, Connect community member Aneeba shares what it’s like to live with her rare eye condition.

Hi, my name is Aneeba and I’m 26 years old. I have a rare genetic condition called Laurence-Moon-Bardet-Biedl syndrome (BBS), which affects 1 in 1,000 babies born in the UK.
The eye conditions I have as a result of this syndrome are nystagmus, cataracts and retinitis pigmentosa. Because of these, I can’t see colours or in the dark very well. I’m also sensitive to bright sunlight.

I’ve been registered blind since 2010, but I do have some useful vision as I have been wearing glasses since I was eight months old. I use a cane and wear my glasses daily, but only for short distances as I can focus better on things far away without them.

In addition to visual impairment, the most common symptoms people with BBS have include:
  • Extra fingers and toes
  • Hearing impairment, and
  • Speech impairment.
And with my own experience of having BBS, the other problems I have are:
  • High blood pressure
  • Eczema
  • Mild kidney problems
  • Spondylosis (pain from a degenerative spine condition)
  • Childhood asthma
  • Weight problems, and
  • My extra fingers and toes were removed at birth.
I volunteer for RNIB in Birmingham as a Fundraising admin volunteer. Some of the assistive technology I use to help me includes a computer with ZoomText installed; additional desk lighting; and VoiceOver on my iPhone.
In my spare time I like to sing; listen to Talking Books; go for walks; and socialise with family and friends. I have an amazing network of people around me who are very supportive and understanding.
I don’t let BBS stop me from achieving my dreams.

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