Website rebuild

As some of you are aware we have been having problems with the website, and before it actually broke, we decided we needed to rebuild it urgently. We knew that this was something that we would have to do ourselves, as  we simply didn’t have the necessary funding to pay for it. There wasn’t time to find sponsorship for this either.

Neither Rea nor I are really experts in this field, but luckily we found Tracey Rickard, (WordPress custom theme, design and website development),  via another contact,  and she kindly came to our rescue.  Unbelievably she has given a large chunk of her time to us for free, for which we are extremely grateful. She  successfully performed the upgrade for us, and we are particularly glad that we involved her as it  turned out to be a lot trickier than envisaged.  She subsequently helped with some of the styling as well.  We would certainly have struggled without her.

Apart from the visual appearance, you will notice some changes:  all information is now available to everyone. We have abandoned the members area, now that we have the Discussion Forum up and running.  (Separate registration required)

Please be reassured that you are all still safely registered on our database.    The registration process for new members to the  database is now slightly different. It will now be by email done by us, rather than by automated website software.

We will be sorting out any glitches and problems that develop as quickly as we can. Please tell us if you encounter problems as we can’t sort them out if we don’t know about them!

Normal BUS news updates should resume at the end of this week.  Watch-out for the email and make sure you have both our email addresses birdshot@live.co.uk and birdshot@uveitis.net, saved in your address book to be sure to receive the update.

ANNIE AND REA

 

Please  tell us what you think by commenting below.

Update on Birdshot Uveitis Society.

Since the launch of the Birdshot Uveitis Society website just over a year ago, we are now in touch with over 250 people with Birdshot from across the world with nearly 100 of these people living in the UK and signed up and registered with BUS.

In addition we have people registered from as far away as away as USA, Canada, Honolulu, Fiji, Israel, New Zealand, Australia,  South Africa as well as several European countries. 25 healthcare professionals are also signed up (NOTE this does not include all of the medical people involved with the Birdshot Day). These professionals with an interest in Birdshot range from consultants, researchers, registrars, doctors, nurses, medical students, pharmacists and other allied professionals.

We believe that BUS is making strides towards our objectives, having managed to identify a significant group of people who have the condition. We believe that we are in a position to be able to provide a good cohort of patients for researchers interested in doing research into this sight threatening disease.

Annie and Rea

Important please read

Dear Members

We believe that there was a problem with our weekly newsletter last week. It would seem to have got caught up in new spam filters before it ever reached you.  Obviously we are not sure how widespread this problem was, but we thought we should email you to let you know about the potential issue.

We are told that if you add this email address to your address book, it may help prevent this from happening.  If that does not work and you still do not get the news updates,  and so that you do not miss out on any important news, you can always subscribe to the site via the RSS feed button that you find in the top right hand corner of screen.  Simply save the feed to your internet  favourites bar, as described in our post last week, and then check it from time to time to see what is new on the site.

Also please note that if you do not wish to receive our weekly update news from us, you have the option of signing into the website and unsubscribing from the news letter when you are logged in.

Yours

REA AND ANNIE

Short survey for all people with Birdshot

We would also like to gather more information about people who have birdshot and have a short questionnaire that we would like you to download, fill in and send back to us.

These questionnaires will be analysed and they will be written up for potential funding bodies such as the National Institute of Health Care Research.

Please be assured that this information will be held in strictest confidence and individual information will not be released to anyone. (aggregated, general information, will be used to further the cause of Birdshot).

BIRDSHOT QUESTIONNAIRE MARCH 2011 (word document)

BIRDSHOT QUESTIONNAIRE MARCH 2011 (pdf document)

Annie and Rea

What is an RSS feed?

rss feed graphic

Have you ever wondered what that orange button in the top right hand corner of our website was for?

It’s a news feed button, which if you click and subscribe to keeps you in touch with recent news.  You can get the latest headlines in one place, as soon as it’s published, without having to visit the websites you have taken the feed from, eg on our website it takes you to here:    feed://birdshot.org.uk/index.php/feed . It also provides an easy way of scrolling though previous topics if you are trying to find a post but are not sure where to look.

How do I start using feeds?

You will need one of the following to read RSS feeds:

Modern web browser or a web news reader

Most modern browsers, including Firefox, Opera, Internet Explorer, Safari and Chrome automatically check for feeds when you visit a website, and display the orange RSS icon when they find one. Many of them allow you to add RSS feeds as a browser favourite or bookmark folder, automatically updating them with the latest content.

There is a range of different news readers available and new versions are appearing all the time.  Different news readers work on different operating systems, so you will need to choose one that will work with your computer  Once you have chosen a news reader, all you have to do is to decide what content you want it to receive.

For example, on the case of Birdshot Uveitis Society,  simply visit our website and select the orange RSS button on your browser, and add  it to your favourite websites.

Our very own text book!

This is a recently published text book about Birdshot by Dr Stephen Foster. It’s available from Amazon in the UK. The content is based on material from the first Birdshot conference held in Boston in 2008 which Rea and I went to.  It is available from Amazon. Birdshot Retinochoroidopathy and you can take a look inside the book there and see the type of material it contains.

Volunteer help please!

We are wanting to compile a comprehensive list of Hospitals with ERG facilities which do ERG tests for people with Birdshot Chorioretinopathy and we wondered if any of our members would like to take this task on.

We have a list of hospitals where we know they are done, but we believe that it is by no means comprehensive.    It will probably require quite a few phone calls or emails, but there doesn’t appear to be any comprehensive source for this type of information and it would be really useful for us to have it.

Please get in touch with Annie or Rea if you would like to help with this.

Many thanks.

At the moment we have full details for the following:

  • Aberdeen Royal Infirmary,
  • Stoke Mandeville Hospital,
  • Manchester Royal Infirmary, Manchester
  • Moorfields Eye Hospital
  • Royal Victoria Infirmary, Newcastle
  • Oxford Eye Hospital, Oxford
  • Sheffield Teaching Hospitals, Sheffield
  • Southampton Hospital
  • Glasgow Caledonian University, Glasgow
  • Royal Liverpool and Broadgreen Uni Hosp, Liverpool
  • Queens Medical Centre, Nottingham

Offers of help are much appreciated!

The instructions for joining the forum

8 people now registered on the forum, apart from Rea and Me, with us, thats 10,  and one of the people who has just joined is newly diagnosed, so she is waiting to hear from some of you who have lived with Birdshot for a bit, not just Rea or me!    We’d be grateful if you could sign in and let her know that there are others out there living with it….

Following on from that, I have  just had an email from someone who is having a problem registering and signing in.  It is a separate process registering on the forum.  Once you are registered, you have to sign in.  You can tick the box to leave you signed on if you want, but that means others who have access to your computer will be able to see the forum you are chatting on.

Any way the detailed instructions are as follows:

Click the logo on the right of the page.  (This takes you to registration, not log-on.)

Read the registration rules, or scroll to the bottom of them.

Click the box which says   “I agree to these terms”

Type in the information requested.

This is user name;

email address

repeat of  email  address

password

Repeat of password

And then answer the “spambot”  question.  for example if it says 4 x 3  what you have to do is type in 12

2+2  you type in 4

use numbers

Then click submit.

Then a message will come up saying that you will have to authorised.

This may take a little while since, but we want to include this additional security, to prevent unwelcome visitors which will cause more work in the long run.

If you ran into difficulties and you want us to register you on the forum,  we are happy to do this.  We can allocate you a password which you can then change to one you can remember.

NB  The Log-in is on the left at the top of the page.

Good luck, and please let me know if these instructions are still not clear.

Vitamin D controls gene action?

At the Birdshot Day in September there was, not unsurprisingly, some discussion about what it is that triggers Birdshot.  The answer the experts gave was that they did not know but that it was thought to possibly be some environmental factor.  What was stated clearly,  is that there needs to be research into this.  The article below by  Steve Connor, Science Editor of the Independent on Sunday makes interesting reading for people who suffer from Birdshot Chorioretinopathy. It was published in August 2010. Vitamin D is produced naturally by the skin but only in the presence of sunlight.  Perhaps it may offer a possible clue which could be followed up?  Vitamin D is after all a cheap commodity.

What does Viatmin D do?

Vitamin D protects the body against a range of serious illnesses by binding to the DNA of the body’s cells and directly controlling the genes implicated in diseases such as multiple sclerosis, diabetes and cancer, a study suggests.

It is the first time that scientists have found direct evidence to suggest that the “sunshine vitamin”, which is made by the skin in the presence of sunlight, directly controls a network of genes linked with a wide variety of serious disorders.

Although previous studies have linked vitamin D deficiency with a growing list of illnesses, especially the autoimmune diseases such as multiple sclerosis, rheumatoid arthritis and type-1 diabetes, until now scientists have not been able to show how it could trigger so many different disorders.

The latest study suggests a possible mechanism by showing that vitamin D binds directly to parts of the human genome that house the genes known to be linked with these serious autoimmune disorders, which result from a person’s immune system attacking the body’s own tissues.

“A surprisingly large number of genes that have been highlighted by gene-associated studies in autoimmunity and cancer seem to be regulated by vitamin D,” said Professor George Ebers, a clinical neurologist at the Radcliffe hospital in Oxford.

“This is indirect, but intriguing evidence that vitamin D will prove to be a major player in the key gene-environment interactions that expose us to diseases,” Professor Ebers said.

It is estimated that a billion people in the world could be suffering from deficiencies in vitamin D, which can be ingested in the diet in small amounts but is primarily produced by the skin when exposed to direct sunlight, so the findings could have major health implications for people living in northern latitudes with low levels of sunlight.

The researchers, funded by the Wellcome Trust, analysed human cells that had been stimulated by the active form of vitamin D. They found that the vitamin D receptor protein bonded to a total of 2,776 sites along the DNA of the genome. They also found that the vitamin had a significant effect on altering the activity of 229 genes located near to these sites.

“We screened the whole genome and found all the sites where vitamin D binds. The evidence is now quite solid that not only is there binding but we’ve been able to show that it actually affects the functioning of the gene. It’s not just sticking to that region, it’s actually altering gene expression,” Professor Ebers said.

“We show there’s an excess of genes that are associated with a bunch of autoimmune conditions that seem to have the vitamin D regulation feature. I don’t think we can say [this is] cause and effect, but it’s not a coincidence. It is clearly not there by chance. There’s a very substantial bias among these genes that have been highlighted as playing a role in these autoimmune conditions, and that have turned out to be regulated by vitamin D,” he explained.

If the study, published in the journal Genome Research, is supported by further research it could explain why vitamin D plays such an important role in a wide spectrum of diseases and why people who are native to northern latitudes have over many generations evolved a white skin, which absorbs sunlight more efficiently than darker skin.

“Vitamin D status is potentially one of the most powerful selective pressures on the genome in relatively recent times. Our study appears to support this interpretation and it may be we have not had enough time to make all the adaptations we have needed to cope with our northern circumstances,” Professor Ebers said.

Sreeram Ramagopalan, of the Wellcome Trust Centre for Human Genetics at Oxford University, said the findings suggest vitamin D supplements may be important. “Vitamin D supplements during pregnancy and the early years could have a beneficial effect on a child’s health in later life,” he said.

Three ways to get your fix

*Vitamin D is produced naturally by the skin but only in the presence of sunlight. Sunshine contains ultraviolet light B (UVB) which converts a ubiquitious precursor substance in the skin, called 7-dehydrocholesterol, into vitamin D3. This can then be converted by the liver and kidneys into the biologically active form of vitamin D.

The vitamin is also present in relatively high amounts in fish and shellfish, and in lower amounts in eggs and dairy produce. By far the easiest and best way of delivering enough vitamin D to the body is to expose unprotected skin to direct sunlight for a few minutes each day. But light-skinned people are advised not to burn their skin.

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.

A clinical trial has found that saffron, the famous Indian spice, can improve vision in patients with AMD, according to new reports. The trials were conducted by Silvia Bisti of the University of Sydney. The trial participants showed significant vision improvements after taking a saffron pill for three months, she said. “Measurements using objective eye sight tests showed patient’s vision improved after taking the saffron pill. When they were tested with traditional eye charts, a number of patients could read one or two lines smaller than before, while others reported they could read newspapers and books again.” The trial was double blind and randomly controlled, involving 25 subjects over six months. Half the group were given a saffron pill for the first three months followed by a placebo, while the other half were given the pills in the reverse order. “All patients experienced improvements in their vision while taking the saffron pill,” Dr Bisti said. “But when they stopped taking the pill the effect quickly disappeared”

http://www.myvisiontest.com/news.php