Registration

Registration

We are also keen to build up a database of everyone who has Birdshot in the UK so that we can raise the profile of this rare eye condition, ensure appropriate funding is offered for those with Birdshot and understand the incidence and prevalence so that useful research for new treatments or prevention can be found. Please complete the form found at this link.  At this stage we simply need your name, email address and a short message, telling us a bit about your Birdshot and who you are treated by and which country you live in. We will then be in touch with you by email and add you to our register.    Please note that we have to verify you before you gain access to the members area, so please bear with us as this can sometime take a few hours. All information will be treated confidentially.

Thank you for joining the register.

 

 

 

 

 

One thought on “Registration

  1. Hi,
    I was diagnosed with Birdshot in June this year. I was very fortunate to meet Rea in the pharmacy of Mayday hospital on the same day and talking to her about the condition. This really helped having only just been diagnosed by Prof A I have had the condition for a year now and have yet to find the right medication. I am on 17.5mg Methotrexate weekly and Prednisolone 18mg a day per week having tapered from 80mg. This is my second time on steriods and whilst they have cleared my eyes, now that I am reducing by 1mg per week I have started to get misty floaters back, plus all the other side effects like moon face, hump back, extremely sensitive teeth, to name but a few. I have also tried Ciclosporin and Tacrolimus without success; get awful side effects and have been told that I am intolerant to both drugs. In the past when I have come to the end of using the drugs because my eyes have appeared to have calmed down, my eyes flare up almost instantly and are even worst than before on each reoccurance.

    I would be really interested in finding out if anyone else has had similar problems with these drugs and if they have found success with anything else. Any help or advise will be greatly appreciated.

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