Nutrition and Acupuncture

Ocular Inflammatory Disease – Nutrition & Acupuncture

A lot of our members believe that it is worth eating an anti-inflammatory diet in the hope  that it might improve the inflammation found in their eyes. Rea discovered this presentation (above) some months ago, and I decided to give George Mandler a call the other day, to find out a little more.

George Mandler is a nutrition specialist, who got interested in uveitis because he had a number of patients with the condition. This is the slide presentation that he used at a support group meeting at the well-known  MERSI Ocular Immunology and Uveitis Foundation.

For those of you  who are interested we thought we would like to share this presentation with you.  It gives you a number of pointers and leads.

Mr Mandler said that there is conclusive research that shows real benefit for patients with rheumatoid arthritis who follow an anti-inflammatory diet. He also said that acupuncture can definitely reduce pressure in the eyes.

This of course is pretty easy to test, so if any of you are suffering from eye pressure, you might like to see if acupuncture can help you, as well as the usual eye drops.

“I tried acupuncture myself a few years back when I wasn’t being treated. The problem I found was finding a well qualified acupuncture close to where I live.  The man I saw did not think that acupuncture would help my eyes much. But then I didn’t have  an eye pressure problem. I would imagine, that even if you have a good acupuncturist and it does work, you will need to have regular sessions, presumably for ever.” Annie

BUS would never, ever advise you to stop medication – nor would we ever advise you that acupuncture is a ‘cure’, but we do know that there is a lot of evidence around that acupuncture is beneficial – but we do advise you to always discuss any alternative and complementary treatments you seek with your consultant, just in case there are any contra-indications. Having said that, there are a number of complementary and alternative methods that people have tested out and work for those individuals. You will remember we posted about saffron recently. Again, there is evidence to suggest that saffron does help your vision. It is well worth viewing the information attached – the more knowledge you have, the better equipped you are to be in control of your Birdshot, rather than letting it control you!

Annie and Rea

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.

Forum

This is just to let you know that we have set up a discussion forum for the Birdshot Uveitis Society.  You have to go to the forum and register there, before you can  sign in and participate.   (Also if you have any difficulties signing up, tell us you want to, and we can do this for you.)

We want it to be a private area where people can discuss issues and chat to other members so that you can become more involved in this growing community.

Currently we have over 180 members registered on our database.  The membership comprises patients, supporters, relatives, and professionals.

We need your help with this. The forum is going to take a bit of time and your input to develop to see if it is something that you want and value, and works easily and efficiently for you. Please log on and leave your discussion threads and then feed back to us what works well and what doesn’t so we can improve and develop it.  We hope you want to sign up and tell us what you would like us to do for you!

To get to the forum, click on the Birdshot logo on the right of the main page.  To get back to the main Birdshot site, click on the logo at the top of the forum page, and you will find yourself back here.

Annie and Rea

Medical students involved in Birdshot Day

4-med-students-AoME-2011

Louise Ramskold, Rebecca Morris, Robert Wilkinson and Ruthiran Kugathasan, UCL medical students presented their posters about the  Birdshot Day held in September 2010 to the AoME (Academy of Medical Educators) this Wednesday.    Here they are pictured in front of their posters.

Titled:   A Visual perspective, (right) and Birdshot Chorioretinopathy a Birdseye view (left), the posters set out what the students had learned from their involvement with the day.

Here are couple of quotes from two the students who were involved.  As well as us patients learning a lot, it seems that the day has also helped to make our future doctors much more aware of a patients’ need.

“As a basis for medical education it taught us about a novel way of enhancing patient care, providing support for patients, their relatives and the professionals looking after them, decreasing medical errors by increasing awareness of the disease (and the potentially toxic drugs used to treat it) and optimising the strength of the relationship between the patient and health care professionals. Through this effort as medical students, we have not only learnt about the disease, but enhanced our communication, organisational and evaluation skills. We have discussed with patients and professionals the problems of caring for patients who have a chronic visually disabling disease (for which there is no cure) and understood the disease from the patients’ point of view.”

The Birdshot Patient Day was not only a day in its isolation, but a whole project which has provided me with invaluable skills and memories. Being involved as a medical student in the organisation of the event from its very outset allowed me to see it grow from an animated vision to reality. In preparation of the day, we were given concrete tasks – such as generating means of evaluating the day and to investigate the, possibly differing, views of patients and health care professionals on various Birdshot related themes. With these tangible goals in mind, we set off learning about Birdshot, problems in treating and living with a rare and chronic disease, support structures available and the invaluable source of enthusiasm and knowledge from expert patients. I found it extremely inspirational to work so close with both patients and a whole range of health care professionals. The assignments gave obvious purpose to the work and as we attended seminars on Birdshot as well as interviewed patients, it quickly became clear how important mutual understanding and effective communication are in order to decrease needless medical errors and to improve the doctor-patient relationship. This innovative strategy of engaging medical students in patient days can be applied on a much broader scale and I personally feel that it should be something that more students have the opportunity to pursue – both for our own and future patients’ benefit.”

A Birdshot member said this just before Christmas about what we have done:

If I ever come across someone with a rare disease without a support group, I’ll tell them to set one up along the lines of BUS!”

We are  of course delighted to hear this !

White blood cell 'master switch' discovery

This is some breaking news which applies to inflammatory autoimmune diseases. The news is from scientists at Imperial College London, who helped to invent anti TNF medication (which some of us are on, for example Humira/Adalimumab). Imperial college scientists are hoping that, by finding the ‘switch’ for inflammation, they will be able to develop medication that can also turn off the inflammatory switch, so helping people like us with Birdshot Chorioretinopathy.  We thought members might like to read about something that sounds as if it might be a  promising  scientific development, which furthers the understanding of how inflammation can be controlled.

Annie and Rea

“Scientists in the UK have identified a protein that acts as a ‘master switch’ in certain white blood cells, determining whether they promote or inhibit inflammation. They believe these findings, presented in the journal Nature Immunology, could aid treatments for diseases, such as rheumatoid arthritis, which involve excessive inflammation. The study was funded in part by the MODEL-IN (‘Genomic determinants of inflammation: from physical measurements to system perturbation and mathematical’) project, which is backed with more than EUR 2.9 million under the EU’s Seventh Framework Programme (FP7).”

The full report from the EEC Research Centre  can be found at:

White blood cell ‘master switch’ discovery to aid rheumatoid arthritis treatments

EEC Research Information Centre – News 28th January 2011

Mike Brace on vision loss

The inspirational Mike Brace CBE, Chief Executive of VISION 2020 (UK) talks about losing sight in one of his eyes from a firework accident when he was 12, the subsequent development of uveitis in his remaining eye, and how he has dealt with this. He vividly describes life following his sudden loss of vision at such a young age. His talk at the Birdshot Day, was greeted with enormous laughter as he is such an amusing and inspirational speaker. He explains exactly what challenges he faced, and how he never let his loss of vision hold him back from achieving. (Apologies for having to shorten this to the maximum 20 mins. It was a hard choice to decide which jokes to cut.)

Link to Mike Brace’s talk

Birdshot Day in Paris

Ifl20110326

We want to alert any one with Birdshot who lives in France that there is a Birdshot Day in Paris on the 26th March 2011. If you want to find out more about it, you need to visit the website http://asso.orpha.net/INFLAM/cgi-bin/w1/ and/or email them for more details. We know that this is an annual day and that it is part of a Birdshot research intitiative. We saw it mentioned on the inflamoeil website and also on a new site started by Sylvain Mignon. He is an artist with Birdshot, who has set up a Foundation in France with the objective of raising money for new Research into Birdshot, being undertaken in France.

http://www.horus-birdshot.fr/topic/index.html

AIN 457 Study – my personal experience

P1250053Could this be the answer?

From a personal perspective, Nick tells his story about his experience on the Phase 3 Novartis AIN457 Study

“I’m really happy to bring some good news. I’ve been taking part in the Study of a new treatment for the last 6 months and it seems to be working. I’ve been off all other meds for 2 months now without any sign of a flair-up and my doctors agree that the new treatment seems to be controlling the disease.

AIN457 is a new drug in the final stage of trials to treat a number of different inflammatory conditions. It has been created by the Swiss company Novartis and is a fully human antibody to Interleukin 17a – a messenger in the immune system which is thought to be responsible for a number of auto-immune conditions including Birdshot. Continue reading

People with Birdshot talk….(2010)

It’s a frustrating fact that diagnosis for Birdshot is not easy, even for the experts. That’s why it takes so many of us a long time before we eventually get told what is wrong with our eyes, and even then, sometimes we get told later on, that actually after all it’s not Birdshot, but something else which more than likely needs equally aggressive treatment. Dagmar of Birdshot Lefora website reminds us that we need to remember that:-

“There is NO single test/indicator/marker for birdshot, although everyone seems to think the HLA A29 positive is. It is not. Just one of many areas a good diagnostician will ponder. We all want an answer and the reality is, for some, there is not a definite yes or no as to their diagnosis.

Uveitis = inflammation of the uvea, something has caused that inflammation. Therefore, having uveitis indicates there is something else wrong; there are about 60 or so conditions that are identified as causing uveitis, and for a quite few, the diagnosis is ideopathic or cause unknown. Our ophthalmologists are just like a lawyer who is building a case, bit by bit, with each piece of evidence to draw a conclusion.”

Here are 3 short interviews  people with birdshot who attended the Birdshot Day back in September 2010.

Mrs Birdshot has had Birdshot for over thirty years. It took a long while for her to be diagnosed and over the years has received a number of different treatments, some more successful than others. Her’s is a positive story. She has maintained her vision and she doesn’t regard herself as ill and doesn’t want to be thought of as a patient. She wants to have a partnership approach to her treatment with her doctor.

https://audiomack.com/embed/birdshot-recordings/song/mrs-birdshot

Carole’s story is similar to Annie’s. She has been treated for a number of years and has maintained reasonable vision.

https://audiomack.com/embed/birdshot-recordings/song/carole

Lesley is a young woman who has been treated for her Birdshot for over 10 years. She’s had a tough time finding the right treatment for her Birdshot and her arthritis, but her current medication is controlling both and she couldn’t be happier.

https://audiomack.com/embed/birdshot-recordings/song/lesley


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