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My 20 year old daughter was diagnosed with this a year ago,it has completely overtaken our lives.Does anyone have any knowledge of this rare disease?I would appreciate some feedback on the best treatment programme as she is not getting better.

Thankyou

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Hi,

I am so sorry to hear about your daughter. My mother was diagnosed over ten years ago - it affected her hearing (she is now profoundly deaf), still has 20/20 vision, however her life has been majorly impacted.

 

When my mother was diagnosed, there were only 40 odd known cases in the world, as of last year, the number had surpassed 200. Therefore, the research into Susac's is not heavily funded, and unfortunately the founder of Susac's syndrome passed away in the last year or so. HOWEVER, he did set up a research centre, so you may like to get in touch with them - there are in the US.

 

The treatment is completely relevant to the individual as Susacs affects people differently - no one course of treatment fits everyone.

 

It is a matter of trying different medications to halt or slow down the disease and them manage the outcome.

 

There is a site for support networks with some information: 

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Some research indicates that the severity of the impact will only be known fully after 18-24 months.

 

Good luck and keep fighting for answers and support from the medical community.

 

K

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