Personalised Healthcare from E.G.A.N.

The link to a PDF file below is to an interesting booklet produced by European Genetic Alliances Network.  It answers questions about what Personalised healthcare is.

“In one sense , personalised healthcare is nothing new.  It is what doctors have aimed to provide for their patients through the exercise of their clinical judgement, backed up by specialist knowledge and the use of appropriate diagnostic procedures.

However, as research advances and we begin to understand more about he complexity of common disease, it is clear that a standard approach to the treatment of various  diseases and disorders does not yield the results patients need.  Increasingly therapies are now being selected based on an understanidng of the underlying genetic components of a condition and how these interact.”

The PDF link will tell you more.

Rea

Your chance to hear Dr C Stephen Foster

Back in March the world renowned uveitis expert,  Dr C  Stephen Foster M.D  from the Ocular Immunology and Uveitis Foundation, MERSI, Boston   http://www.mersi.us gave a lecture at Gresham College, London, on Inflammatory Eye Disease.  It was part of the series that Professor William Ayliffe is giving about the Eye, Vision and Perception.

For those who were unlucky and missed it, here is a link to the audio clip of  Dr Stephen Foster’s Gresham Lecture.

A few members of Birdshot Uveitis Society decided to meet up and go to the lecture together.  For most of us it was the first time we had ever met another person with birdshot.  One member wrote to us afterwards and said he was surprised what a positive effect this meeting had on him.  This is what he said:-

“I just wanted to say thank you for alerting me to the talk by Dr Foster which despite the pictures was most interesting. I also wanted to say how great it was to meet others with Birdshot.  I didn’t think it would make much difference,  psychologically, to meet others with the same condition.

I realise now that it has made a big difference and that I got a sense of relief knowing that there are others out there going through the same, and worse (or better), than me.   I hadn’t expected the feeling to be quite so strong. ”

We are very much hoping that others will feel the same and benefit  by coming along to the Birdshot Day we are holding on September 11th.   See  Patient Day for further details.

Annie and Rea

Publicising the Birdshot Day and BUS

Birdshot Day New Day We have been advertising the Birdshot Day and our website  in as many places as possible, as we want everyone who has birdshot, their families and friends and health care professionals with an interest in the condition, to have the opportunity to come to participate and learn.

Graphic Artist David Bethell has designed another superb poster specifically to advertise the day.    Please contact us at Birdshot@live.co.uk if you would like  a  copy of the poster to display in the eye clinic (you will need to ensure you give it to the right person to get it displayed).  If you prefer you can download the poster from the site and print copies.   We have a choice of colour or black and white.

We need your help to make sure the Birdshot Day is widely publicised in the right places.

We now have links to the Birdshot Uveitis Society’s website on a growing number of national and international sites as well as sites such as Facebook, Wikipaedia, Rareshare, Birdshot lefora forum and  a many more.  If you have ideas about other places we should advertise our Birdshot Uveitis Society website and the  Birdshot Day,  we would be  grateful for your suggestions.

Below are a number of links to sites where the Birdshot Uveitis Society is mentioned.

Many thanks.  Annie

American Uveitis Society

Contact a Family

Guide Dogs for the Blind

Orphanet

Article in Orphanet News April 21st about the Patient Day

PIC Society

RNIB – Rare Diseases and the  Events listing

UK Patient Plus

Unintended effects of Statins

Rea came across this piece of research, published in the BMJ last week, which highlights increased risk of liver/kidney damage and myopathy and cataracts from taking statins.  The research highlights some of the possible side effects of taking higher doses of statins.

As a result of this, Doctors are being urged to choose the lowest possible dose when they prescribe cholesterol lowering statins.

If you currently take statins  you may wish to review this with your GP and Ophthalmologist, discuss the benefits against the risks to find out if drug you are prescribed should be changed.

The link below takes you to the published paper.

http://www.bmj.com/cgi/content/full/340/may19_4/c2197#SEC1

Smoking

Recent research has shown that individuals who smoke have a 2.2 times higher odds than those who had never smoked of having ocular inflammation, with all anatomic subtypes of uveitis associated with a positive smoking history.

In the study, a positive smoking history had an odds ratio of 1.7 (P =.002) for anterior uveitis; 2.7 (P = .005) for intermediate uveitis; 3.2 (P = .014) for posterior uveitis; and 3.9 (P < .001) for panuveitis.

The odds ratio for panuveitis and cystoid macular edema (CME) was 8.0; for those without CME, it was 3.1, according to the study.

“A history of smoking is significantly associated with all anatomic subtypes of uveitis and infectious uveitis,” the study authors said.

“The association was greater in patients with intermediate uveitis and panuveitis with CME compared with those without CME. In view of the known risks of smoking, these findings, if replicated, would give an additional reason to recommend smoking cessation in patients with uveitis.”

The retrospective case-control medical record review looked at 564 patients who had ocular inflammation and 564 randomly selected eyeclinic subjects. All patients were seen at the Proctor Medical Group between 2002 and 2009.

The study employed a logistic regression analysis. Ocular inflammationwas the main outcome variable, and smoking was the main predictor variable variable, with adjustments for age, gender, race and median income.

So if you are a smoker and you have birdshot, you know what you should be trying to do!  It’s obvious smoking can’t help.

Ophthalmology. 2010;117(3):585-590.

Cookery Books

I attended a patient conference for younger people with macular disease today and came away with two great cook books that I want to tell you about.  I am sure anyone interested in self-help and healthy eating will enjoy them. They contain recipes which are good for eye health.

Fruit for Vision  and Vegetables for Vision – Nature’s Supplements for Eye Health  by Ian Grierson Professor of Ophthalmology University of Liverpool.  They contain lots of delicious looking recipes which are good for eye health.

The books will be of great interest to anyone wanting to eat healthily and gain pleasure from fruits and vegetables.  The recipes are intended to be a stimulus to eat more fruit and vegetables.

They retail for £10.00 each or £17.50 for the pair plus postage and packaging and are available from the Macular Disease Society see the link below.  http://www.maculardisease.org/show_news.asp?section=00040003&id=425&date=2009/08/02

My mouth is watering, looking at some of these recipes and thinking about eating them!

Annie

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

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