Steroid induced hump

Here is a question that a new member Vicky asked us to pose to see if anyone has any useful advice for her.  This is what she says:-

“Do any of you suffer from a hump?

Is there anything I can do to help with this?

To anyone else I guess this would sound ridiculous – but I’m hoping you know what I mean.

I find it quite distressing that my face has changed shape and that I now have a hump on the back of my neck, I understand that this is a side effect of the steroid usage but I was wondering if there were any members who have the same thing and have any tips for helping with this?”

Both Rea and I see chiropractors in our efforts to stay straight, improve our posture and reduce aches and pains that these drugs seem to inflict upon us, but we’d be interested to know if members know of other things that can help alleviate this particular problem.

Thanks

Reasonable adjustment for VI at work?

Following on  from Adrian’s article  entitled “Coming out at Work” about  the Disability at Work Act, we came across this piece of research being done by David Griffiths.  He is looking for visually impaired people who are prepared to be interviewed over the telephone and are  interested in helping out with his research on this topic.  If you are, he can be emailed at:-   d.griffith@btinternet.com. Continue reading

Birdshot and Complementary Therapies

When faced with the news that you have been diagnosed with not only a rare eye disease but one where the prognosis is not good for the future, it is easy to see how you can feel as if your world has been turned upside down.   In some ways it can be looked upon as losing control of what is going on in it.

After being given details of the various medications (and their side effects) which may or may not work, it is almost certain that your emotions and thoughts are going to change – positive one minute and negative the next.  This in turn will have an affect on the physical body especially if one begins to feel helpless in this situation. Continue reading

Help needed with invitreal injections!

Dave, a registered member of BUS has recently written  to us asking for our members help.   He wants to hear from people who have had experience of invitreal steroid injections as the current steroid treatment he is on isn’t dealing with his inflammation.

Can anyone give him guidance on what to expect and what their experience was of this procedure?

We are happy for you to post comments below or if you want to get in touch with him via birdshot@live.co.uk we will be happy to pass on your experiences to him if you don’t want to do this publicly via the comments section of the website.

Hope someone is able to provide him with info about their first hand experiences of this.

Thanks

Annie and Rea

Saffron

We Promised to Re-Issue the Article on Saffron – here it is:

Saffron Improves Vision In AMD Patients

We read about this in the latest Vision Newsletter March 2010. It is interesting to see that some serious research is being done into the affect of Saffron on AMD.  A couple of our members have suggested that Saffron appears to have helped them but we had no idea that scientific research was being done. Continue reading

Green Tea

New Evidence That Green Tea May Help Fight Glaucoma and Other Eye Diseases

ScienceDaily (Feb. 20, 2010) — Scientists have confirmed that the healthful substances found in green tea — renowned for their powerful antioxidant and disease-fighting properties — do penetrate into tissues of the eye. Their new report, the first documenting how the lens, retina, and other eye tissues absorb these substances, raises the possibility that green tea may protect against glaucoma and other common eye diseases.

The whole article can be found by following this link.

http://www.sciencedaily.com/releases/2010/02/100218125520.htm

2 members – email address ERROR

We are desperately trying to get in touch with two members whose email addresses appear to not be working. Hopefully the two members will recognise themselves:

User name: Glass

User name: Sue B

You both registered recently, but your email addresses do not seem to be working. perhaps you entered a misspelled email address? If you could email us at Birdshot@live.co.uk, we can respond to you.

Birdshot Patient Day News

Dear All,

Birdshot Chorioretinopathy Patient Day

You are cordially invited to a Birdshot Patient Day organised by The Birdshot Uveitis Society on Saturday 11th September 2010 from 10.00 to 16.45. It will be held at the UCL Roberts Buildings, Torrington Place, London WC1E 7JE.  Download our leaflet and registration form here.

The Day is a unique opportunity for people with a Birdshot diagnosis and leading specialists, nursing staff and trainees, to meet, share experiences and learn from one another.   We would like as many people with Birdshot to be able to come and share their experiences.  We hope it will be an enjoyable and rewarding day.

You will be able to:

  • meet the experts
  • find out more about new treatments and research
  • take part in smaller breakout groups discussing issues affecting you
  • help shape the future for people with Birdshot
  • have the chance to get questions answered
  • talk to health professionals
  • meet others with the same rare eye condition

We also want to hear about your ideas for the day, so that they can be included.   We would welcome a list of questions you want answered.  If you would like to share your Birdshot story, please tell us so that we can try to include it.  We look forward to hearing from you and hope to meet lots of you soon.

Annie and Rea

Birdshot Uveitis Society  (email: birdshot@live.co.uk)