Sticky Blood-Hughes Syndrome Support

New - Blind and Deaf

My brother was diagnosed with Hughes syndrome 6 months ago. He has lost his hearing and all of his sight in his right eye and very little sight left in his left.

He recently had two ops - Cochlear implants. and a tube put behind his eye because of the pressure behind his eye and severe pain.

Has anyone else gone through this ? If so can you give me any advise as we are worried he will go totally blind.

4 Replies

Hello, this all sounds very stressful and upsetting, I can't personally advise, but I am sure that others on here will do, many have had problems with eyes and also neurological features - hang on in there as people will come on and give you some support., and some will have had similar experiences. Mary F


Thanks Mary - Had a bad weekend with him so any help or hope would be great


Hi Jasis

I am sorry to hear your brother is going throught such a rough time,i will investiage to see if i can find anything for you but i hope a member might be able to help.



My Sis was diagnsed last Summer and has sight and hearing issues as well. It came suddenly after diagnosis and has declined since then. She has days when she can hear better. She sees double at times. I hope you find relief for your brother, if you do, please share. Many heartfelt prayers. Lene'


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