Documentary on Rare Diseases

Two showings of RARE, a feature documentary that provides a closer look at the relationship between patients, advocacy groups and researchers involved in developing new treatments for rare diseases has just been aired in the US.

It is a really interesting documentary and highlights the importance of patient organisations like BUS being fully involved in the research process.  In fact, if you see the documentary, it is strangely reminiscent of the development of BUS!

If you want to see a short version of the documentary go to:

http://vimeo.com/46443548

If you want to read the article go to

http://scopeblog.stanford.edu/2012/09/07/stanford-filmakers-documentary-on-rare-diseases-to-air-next-week-on-kqed/

What your eyes reveal about your health

The Wall Street Journal published a really interesting article in August on how your eyes can reveal clues to your general health.

An ophthalmologist, Dr David Ingvoldstad from Midwest Eye Care in Omaha, Nebraska regularly alerts his patients to possible autoimmune diseases they may be at risk from or have, such as rheumatoid arthritis and lupus.  He does this through their vision changes, or through the state of health of their eyes.  He has even been able to monitor the progression of a patient’s diabetes through their eyes, and once alerted a patient to the fact that they had a brain tumour, based on the changes in their vision.

He is able to do this because the body’s systems are interconnected, and changes in the eye can reflect changes in the vascular, nervous and immune system.

The article suggests that, with regular monitoring, ophthalmologists can be the first to spot certain medical conditions and can ensure that patients receive early care and treatment.

We, with Birdshot, are regularly monitored!  One benefit of having Birdshot.

Read the full article at:

http://online.wsj.com/article/SB10000872396390444184704577587211317837868.html

Supplements to help with Birdshot Uveitis and Eye Health

This is  the 3rd post on the subject of nutrition supplements and eye health from BUS member Nick Bucknall.  Here he talks about supplements that he believes are helping his eye health and Birdshot Uveitis.  To back up his ideas he provides links to related research papers.

“A balanced diet rich in fresh ingredients should provide most of the vitamins, minerals and trace elements needed for good health. But some of us are getting older or recovering from an illness, or have a natural imbalance, and we also have to deal with the side effects of medication, so if you wish to supplement your diet, here is a list of supplements I have tried and found to be beneficial.

NOTE:  The process of extracting the active ingredients from natural sources in order to manufacture dietary supplements may reduce their efficacy so make sure they are as fresh as possible.

Saffron

Saffron is widely used in some parts of the world to treat a variety of eye conditions. I find it gives a rapid improvement, reducing floaters and blurring within hours! It can be added to food as a cooking ingredient or added to tea or coffee. Put a little in the bottom of the cup and soak for a minute or two in hot water before pouring tea. Saffron is expensive but you only need a pinch in each cup – a gram (about £4.50) should last up to 2 weeks.

Here are links to 3 research papers about the benefits of Saffron for the retina – the part of the eye which is damaged by Birdshot.

http://www.ncbi.nlm.nih.gov/pubmed/20688744

http://www.iovs.org/content/49/3/1254.abstract

http://www.ncbi.nlm.nih.gov/pubmed/20951131

Tumeric

Turmeric (Curcumin) is a traditional remedy for uveitis and can either be used as an ingredient in cooking or can be taken in a capsule. It takes a few weeks to produce results but is very cheap.

For research, see http://www.ncbi.nlm.nih.gov/pubmed/18421073 and http://www.ncbi.nlm.nih.gov/pubmed/17569223

Psyllium husk

Psyllium husk is a natural product derived from plantain and is a dried source of fibre which slows digestive transit, protects the stomach lining and improves digestion. It can be taken as a food additive or in a drink – I take it with fruit squash and aloe vera juice. Some anecdotal evidence has suggested that gastric problems may be a trigger for Birdshot and this has also been mentioned by my eye specialist.

Aloe Vera

Aloe Vera juice is another natural anti- inflammatory. As well as helping digestion, it is also good for skin problems, digestive irritation and indigestion, all of which are common side effects of prednislone.

Omega-3 fish oil

Omega-3 fish (EPA) offers a range of benefits including skin, nerve function and is a powerful anti-inflammatory. If you eat oily fish regularly, you should be getting enough of this but taking it as supplement does no harm and may be helpful if you don’t like oily fish! Also, it’s a good source of vitamin D. For research, see: http://www.ncbi.nlm.nih.gov/pubmed/20664801

Glucosamine, Chondroitin & MSM

This anti inflammatory combination is often taken by arthritis sufferers but may also help with other inflammatory conditions like Birdshot. For research, see:http://www.ncbi.nlm.nih.gov/pubmed/18719082

Vitamin D

Recent research has shown vitamin D to be helpful in treating uveitis. We normally ingest it partly through eating the right foods (oily fish, almonds and green vegetables) and partly through sunlight which our bodies convert to vitamin D. It regulates levels of calcium and phosphate in the bloodstream and is closely linked to bone health. Recent research about the benefits of vitamin D for Birdshotters was discussed at the Birdshot Patient’s Day in March, and can their research paper can be found at: http://www.ncbi.nlm.nih.gov/pubmed/22217419

Pycnogenol

Pine bark extract is a powerful anti-inflammatory which has been shown to protect the retina. For research see:

http://www.ncbi.nlm.nih.gov/pubmed/19916788

NB also see comments below.

Benfotiamine

Vitamin B1 has been shown to be helpful in treating uveitis. For research see:

http://www.ncbi.nlm.nih.gov/pubmed?term=benfotiamine%20uveitis

Lutein

Lutein is a caratenoid found in green vegetables and is known to be good for the eyes. For research see

http://www.ncbi.nlm.nih.gov/pubmed/22465791?dopt=Citation

I take all these on a daily basis and feel that the results make it worth the trouble and expense – I have been in remission without any medication for nearly 2 years. But I still pay close attention to my diet – supplements cannot be a substitute for a good diet.

 

How to make your diet less inflammatory

This is the 2nd article in a series of 3 about food and supplements by BUS member Nick Bucknall.

Below he lists some tips on how to make your diet less inflammatory.

  • Try to eat more fresh fruit & vegetables, whole grains like brown rice, wholemeal bread, fish and seafood, nuts & seeds. Broccoli, spinach and kale are very beneficial as are sweet potato, onion, garlic and ginger
  • Try to buy organic – insecticides, preservatives and other food additives may be inflammatory or even trigger Birdshot. Besides, organics taste better!
  • Avoid red meat and processed meat like bacon, sausages and salami. Cheap or takeaway chicken is likely to contain growth hormones and antibiotics – best avoided
  • Oily fish like wild salmon, mackerel or sardines are rich in omega-3 oils and are very beneficial as well as being a tasty alternative to meat
  • Choose fresh food over processed food, brown bread over white, hard cheese over soft
  • Drink green tea or filtered water rather than fizzy, sugary drinks and milky hot beverages
  •  Your choice of cooking oil can make a big difference – olive, rapeseed and grapeseed oils are all helpful, while sunflower, corn and groundnut oils are generally considered inflammatory
  • Most sources choose red wine over other alcoholic drinks, dark chocolate over milk chocolate, and low fat versions of all dairy products.
  • Foods best avoided altogether include fizzy drinks, crisps, processed meats, sweets and deep fried, fatty foods.
  • Some people benefit from excluding ‘nightshade’ vegetables (potato, tomato, aubergine, peppers). Tomatoes in particular can be inflammatory. Others feel better if they exclude all dairy products – milk doesn’t agree with me. No two people are the same and it certainly pays to experiment.
  • Note: Different foods and ingredients can be described as having a positive or negative Inflammation Factor. This is a way of judging which foods are more likely to cause inflammation and which are more likely to prevent it. Some foods vary in this respect according to how they’re prepared. For instance, garlic is very anti-inflammatory eaten raw but must be crushed to release the beneficial parts. However it’s much less beneficial after cooking.

Further information can be found on the   Inflammation Factor website, www.inflammationfactor.com.

You may also find  “Dr Weil’s  Anti-inflammatory Food Pyramid” of interest. http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammatory-Food-Pyramid.html

Nick’s third post follows.  It is about supplements that might improve eye health

 

 

 

Why changing your diet could help control Birdshot Uveitis

This is the first in a series of 3 posts about diet.   It is written by  BUS member  Nick Bucknall.  Nick is not a nutritionalist but he has taken a great interest in his own diet and and how it might possibly affect his eyes. The article is based on the information that he researched for the “Food and Supplements” stall that he and his wife Caroline ran at the 2nd Birdshot day last March.  Here he explains why he believes that changing your diet could help you control Birdshot.

“Birdshot is one of many inflammatory, auto-immune conditions. It is rare but seems to have much in common with more frequently encountered conditions such as rheumatoid arthritis, Crohn’s Disease, Lupus and Psoriasis – certainly the same drugs are widely used in treatment. It also seems good sense to find out what else besides these drugs has benefited people with these similar conditions – after all, there are literally millions of ‘them’ and only a few thousand of ‘us’.

Birdshot is also relatively new. As far as we know, we are the first generations to be affected, and it has only been observed in people living a modern lifestyle in the developed world. Nobody knows what triggers Birdshot but it is difficult not to wonder if a modern disease might not have a modern trigger?

Obviously, much research needs to be done but if we look to our fellow sufferers of auto-immune, inflammatory disease, the overwhelming advice seems to be that inflammatory conditions can be helped by close attention to diet.

I know a healthy lifestyle and diet are not a substitute for medical treatment but can greatly reduce our dependence on it. We all benefit from a healthy lifestyle – regular meals, exercise in the fresh air, a good night’s sleep and the avoidance of stress, etc.

“We are what we eat” is a cliché, but it is hard to dismiss when so many people have found relief from their symptoms by avoiding the known ‘inflammatory’ foods and seeking out the known ‘ anti-inflammatory’ foods. You could call this a ‘therapeutic’ diet, which is to say it’s a healthy diet with adjustments to reduce inflammatory elements. It isn’t difficult, it isn’t expensive. It may help and certainly won’t harm us. Worth a try? I thought so, and sincerely believe I have benefited.”

Nick’s second post which follows talks about how to make your diet less inflammatory.   the foods to avoid and  ones to eat lots of.

Nick’s third post is about supplements that might improve eye health

 

 

 

 

Blind people to lose millions

The Government’s plans to replace Disability Living Allowance (DLA) with Personal Independence Payment (PIP) will remove tens of millions of pounds from blind and partially sighted people.

The criteria for the new benefit fail to recognise that sight loss is a serious disability and that you face extensive extra costs if you can’t see.

Act now to challenge this benefits shake-up that will hit blind and partially sighted people particularly hard.

RNIB’s website carries useful information about the government benefits shake-up and what you need to do to lobby against it by writing to your MPs.  To find out more visit the link below.

http://www.rnib.org.uk/getinvolved/campaign/yourmoney/personalindependence/Pages/PIP_act.aspx

 

“My Vision” by Susan Piper – Exhibition at the Birdshot day

We are delighted  to confirm that there is going to be a small exhibition of some recent paintings by one of our Birdshot members at the forthcoming Birdshot day.  This will run alongside the mini art workshop that Jenny Wright will once again be organising for us.  We hope that these initiatives will  add to the diversity and enjoyment of the day.

Here is a little bit about painter Susan Piper and her work to wet your curiosity.

Susan has been painting with passion since 2000 when, having moved to a new home and not knowing many people, she took her Foundation in Art and Design at Alton College in Hampshire – it was the only course she could find that did not have exams at the end of it!  Her distinction gave her the confidence to design and market her own hand-made greetings cards which in turn led to many commissions.

In 2009, Susan was diagnosed with Birdshot (a family tradition as her brother, her father and her father’s cousin had been previously diagnosed with the condition)** which introduced her to the breathtaking, sometimes chilling, retinal photographs and the elegance of OCT images. Finally, after three years, a series of paintings has resulted. Collectively called ‘My Vision’ the series draws to a varying degree on the technical images and symptoms of Birdshot but Susan has also tried to reflect emotional responses to a disease that frustrates even when trying to explain what it is!

A question that niggles for Susan is how much her earlier work was shaped and influenced by undetected Birdshot. More than one artist when questioned on influences has said, “I paint what I see.” In these paintings, Susan has tried to capture what she is trying to see!

Further information about other work can be found at www.shortheathstudios.co.uk.

**  Birdshot Chorioretinopathy running in families is very unusual.  BUS  only  knows of five families where it is known that more than one family member has the condition.  If there are families where more than one person has Birdshot who we don’t know about already,  we’d be very grateful if you could let us know.  Thank you!

 

 

 

Flu shots – it’s the time of year

Have you had your flu shot yet? If you are on immunosuppressants, regardless of your age, your GP should be offering you a flu vaccination as a matter of course. I speak from experience when I say that this does not necessarily happen.

I know there is debate amongst some of our members, but I for one, have never had any ill-effect from having the vaccination and I certainly haven’t caught flu either. I had mine last Tuesday.

This is something you should discuss with your GP because it may depend on what medication you are on and other health issues but we believe it’s an option which is not very likely to have a serious ill affect, but obviously it is up to you.

Annie

Topical Interferon Gamma for Macula Oedema caused by Uveitis

We have a report on a clinical trial that seems to be still recruiting participants (although it is expecting to complete its primary investigations this month). It is being carried out by Robert Nussenblatt at the National Eye Institute in Bethesda in the US. This trial is researching Interferon Gamma–1b administered topically in a drop form rather than by infusion for people who have macular oedema as a result of uveitis (macular oedema can be a complication of Birdshot). This trial may be of interest to our US members, and more information can be found at

http://clinicaltrials.gov/ct2/show/NCT01376362

The trial will be looking for the change in excess central macular thickening as measured by OCT in response to interferon gamma-1b.

Below, we give a brief summary of the trial and who they are looking for:

Brief Summary

Background: – Uveitis is a serious eye condition in which the immune system attacks the eye and can cause vision loss. A common problem related to uveitis is macular edema. This is a swelling of the central part of the retina. This part of the retina is needed for sharp, clear vision. This swelling can lead to more vision loss. – Interferon gamma-1b is a lab-created protein that acts like the material made by the white blood cells that help fight infection. It changes the way the immune system reacts to the cells in the eye and may help to lessen the swelling in the back of the eye. It has been used as an injection to treat other immune diseases, but it has not been tested as an eye drop for use in uveitis other than a safety trial done at NIH in 2010.

Objectives: – To test the effectiveness of interferon gamma eye drops to treat macular edema caused by uveitis.

Eligibility: – Individuals at least 18 years of age who have autoimmune uveitis in one or both eyes, have had it for at least 3 months, and as a result have macular edema in at least one eye.

Design: – This study requires three visits to the study clinic over about 2 weeks. Each visit will last 1 to 2 hours.