Autoimmune Researcher Gets Money

At long last it looks as though the world has finally woken up to the fact that autoimmune diseases are the modern day health problem.  There are over 100 different autoimmune diseases, many of them rare, and more and more people are being diagnosed with autoimmune diseases and no-one knows why.

A researcher in Australia, Chris Goodhew has received a grant from GlaxoSmithKline and he will look at why the immune system is attacking in the first place.  He has a vested interest as his mother has an autoimmune disease, lupus!

It is really good to see a major pharma investing in auto-immune diseases.

Read the full article at

http://www.canberratimes.com.au/act-news/80000-boost-for-autoimmune-researcher-20120911-25qs6.html

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

Microneedles improve drug delivery

Recently New Zealand member Matt drew BUS’s attention to  research into the use of micro needle technology for the delivery of therapeutic drugs to the back of the eye . This link that takes you to the article found in “Gizmag”.

This procedure has yet to be trialled on humans, but if it works as it does in the animal study, it  could well open the door for better treatment via eye injections.   It should provide a less invasive and more targeted way of getting injections into the eye, and will open the way for slow-release drug design. Of particular note,  the injected molecules did not reach the lens or front part of the eye in significant amounts decreasing the chances of side effects such as cataracts which commonly occur with this type of treatment.

Details of the study were published in the July 2012 issue of the “Journal Investigative Ophthalmology and Visual Science” where you can read the abstract for free, but you need to pay or be a member to access the full paper.

Authors:  Samirkumar R. Patel1,Damian E. Berezovsky2,Bernard E. McCarey2,Vladimir Zarnitsyn1, Henry F. Edelhauser2 and Mark R. Prausnitz1  from the School of Chemical and Biomolecular Engineering, Georgia Institute of Technology, Atlanta, Georgia (1) ; and Emory Eye Center, Emory University School of Medicine, Atlanta, Georgia (2).

 

Help Us Make Birdshot a Priority For Research!

We are re-posting this, as the survey ends on 31 July, and we need as many responses as we can get, in order to make sure that Birdshot becomes a priority for research.  If you have not already done so, please complete this survey.  It is quick and simple to do.  We have posted some ideas about what kind of research is needed into Birdshot at the end of this post, to help stimulate debate, and give you some ideas.  Remember that the more people who respond mentioning Birdshot, the more likely we are to get Birdshot as a priority!

The Sight Loss and Vision Survey is a joint initiative between Fight for Sight, The Royal College of Ophthalmologists, The College of Optometrists, the National Institute of Health Research, RNIB and The James Lind Alliance.  It has been set up to find those areas of research that have not yet been identified.  For us with Birdshot, this is really important, as we have a rare disease, and very little research has been carried out to date.  This is our opportunity to get Birdshot (and other rare, auto-immune forms of posterior uveitis) on the national agenda.  Because the survey will be completed by patients, it will have great credibility and it is hoped that funds can then be identified for some of the research needs.

The James Lind Alliance is a non-profit making organisation, funded by the National Institute for Health Research, which will oversee this initiative ensuring the exercise produces an unbiased result, with equal weighting being given to each of the participating groups – so your opinion really will count.

The Sight Loss and Vision Survey will allow you to identify your most pressing questions about the prevention, diagnosis and treatment of Birdshot.

The more Birdshotters that complete the survey the more likely we are to be able to influence the research agenda and receive valuable funding from the government for research into Birdshot – we really do need you to take part.

To complete the survey and learn more about this initiative please visit www.sightlosspsp.org.uk where you will find both the online survey and can request alternative formats – post/fax or telephone.

The survey takes less than 10 minutes to complete so please take this opportunity to represent Birdshot and help change the future of eye research.

Thank you!

1.  What causes Birdshot?

2.  Which part of the immune system becomes disregulated?

3.  How do you re-regulate the immune system without damaging the body?

4.  How can we find less toxic medication that does not adversely affect mental health and quality of life, but preserves vision?

5.  How can we ensure early detection of Birdshot to prevent sight loss?

6.  What are the genetic links and why are several generations of some families affected, and why does it seem to affect mainly Caucasians?

7.  Why is there a ‘spectrum’ of Birdshot?

8.  Why do different people respond differently to different medication regimes?

9.  Why is Birdshot treated systemically with toxic medications which adversely affect mental health and quality of life, when it seems to be confined to the eyes?

10.What does the link to HLA A29 mean in relation to treatment?

11.  What is the risk/benefit analysis of toxic treatment to prevent blindness versus blindness?

12.  What are the long term costs to health and social care of blindness which could have been prevented through the use of off license or off label medications?

13.  Is Birdshot best treated by ophthalmologists or should a clinical specialism of immunology be developed?

14.  Can holistic therapies such as acupuncture, meditation, hypnotherapy help in preventing or treating Birdshot?

15.  Can supplements, such as vitamin D or other therapies treat Birdshot less toxically than current medications?

 

Experimental models of autoimmune inflammatory ocular diseases.

This recent review is from the Brazilian journal  Arq. Bras. Oftalmol. 2012 Apr; vol. 75(2) pp. 143-7  For those with a scientific/medical background, the whole of paper can be found at the following link.   http://www.scielo.br/scielo.php?pid=0004-2749&script=sci_issues

The review, written by medics, ophthalmologists and students, describes the main experimental models of autoimmune ocular inflammatory diseases.  The hope is that by better understanding the process of autoimmune ocular inflammation in animal models, it will lead to a better understanding of human ocular inflammation.

The paper concludes that the current and new models experimental models being developed may help us to develop new therapies with fewer side effects or new ways of delivering therapies.

Exciting news – there seems to be so much work going on around autoimmune posterior uveitis.  For those of you who want a fuller read, we reproduce the conclusion of the review below:

CONCLUSION

“Researches on experimental models have been important to explain the pathophysiological mechanisms involved in different ocular autoimmune inflammatory diseases. EAU is one of the most used animal models. After immunization with uveitogenic antigens, animals develop an immune response mediated primarily by CD4+ T cells. Clinical findings are somewhat similar to some human autoimmune uveitis. Even though these models contribute for a better understanding of the pathophysiology of autoimmune uveitis in humans, there are still many questions to be answered, such as triggers, recurrences, and individual susceptibility. Heterogeneous clinical findings may be related to the observation that each subject may respond to more than one epitope per antigen and respond differently to each one of them, depending on how it is presented and how it is recognized by the immune system.

Lately, new ocular inflammatory experimental models have been available due to the advances in genetics and molecular engineering. These models may help the development of news therapies, with more specific and efficient drugs, avoiding side effects. In addition, animal models are important for the study of new routes of drug delivery, especially by intravitreal injection.

 

Help change your future!

We are posting this again and hope that if you have not already completed this short survey you can find the time to do it.  Your help with this survey could help change future treatment for  all Birdshotters!

 

Rea and Annie

The Sight Loss and Vision Survey is a joint initiative between Fight for Sight, The Royal College of Ophthalmologists, The College of Optometrists, the National Institute of Health Research, RNIB and The James Lind Alliance. It has been set up to find those areas of research that have not yet been identified. For us with Birdshot, this is really important, as we have a rare disease, and very little research has been carried out to date. This is our opportunity to get Birdshot (and other rare, auto-immune forms of posterior uveitis) on the national agenda. Because the survey will be completed by patients, it will have great credibility and it is hoped that funds can then be identified for some of the research needs.

The James Lind Alliance is a non-profit making organisation, funded by the National Institute for Health Research, which will oversee this initiative ensuring the exercise produces an unbiased result, with equal weighting being given to each of the participating groups – so your opinion really will count.

The Sight Loss and Vision Survey will allow you to identify your most pressing questions about the prevention, diagnosis and treatment of Birdshot.

The more Birdshotters that complete the survey the more likely we are to be able to influence the research agenda and receive valuable funding from the government for research into Birdshot – we really do need you to take part.

To complete the survey and learn more about this initiative please visit www.sightlosspsp.org.uk where you will find both the online survey and can request alternative formats – post/fax or telephone.

The survey takes less than 10 minutes to complete so please take this opportunity to represent Birdshot and help change the future of eye research.

Thank you!

 

Uveitis and stress

Many of us believe that stress may be a contributory factor in our Birdshot and in flare-ups.  Stress has been linked to auto-immune diseases and it is commonly thought that there is a stress relationship with flare-ups in other forms of Uveitis.

A paper by R Khanfer , G Wallace, P A Keane, and A C Phillips has reviewed what is currently known about the relationship between uveitis and psychological stress.

Birdshot Uveitis Society knows two of the authors well.  Dr Graham Wallace was one of the speakers at our last Birdshot Day,  and Pearse Keane, whilst unable to attend the Day, has been a key professional working in the field of Birdshot, and will be attending our next Day.   Pearse was introduced to us by BUS member Nick Bucknall and consultant Alastair Denniston.  Both Pearse and Alastair are very interested in  OCT imaging in relation to Birdshot Uveitis and have been working on research in this field as well.

Here is an abstract from the paper:

“Uveitis is an inflammatory condition affecting the eye and is often associated with systemic autoimmune disease. A role for the involvement of psychological stress in autoimmune disease has been widely demonstrated. However, uveitis is not classified as an autoimmune disease, and a definite or direct cause has yet to be identified, although infection may be involved. Many uveitis patients retrospectively report stressful life events occurring prior to the onset or recurrence of uveitis. However, only a small number of studies have explored the potential association between psychological stress and uveitis, and their findings are somewhat contradictory, many showing that the experience of uveitis itself results in stress. ”

It is really interesting to see this piece of research, and our own quality of life survey should help to begin to answer some of the questions:  Is it stress that helps trigger Birdshot (or the severity of Birdshot) or Birdshot that triggers stress or medication that leads to stress and causes flare ups?

Read the full article at the link below.

PMID: 22685876

URL – http://www.ncbi.nlm.nih.gov/pubmed/22685876?dopt=Citation

Testing and Monitoring for Birdshot

We have recently posted about the importance of ensuring that we get the right diagnosis, testing and monitoring for Birdshot as other diseases can often look like Birdshot, but will require totally different treatments.  A research paper from the Massachusetts Eye and Ear infirmary in Boston has recently been published, and builds on this theme.

The paper examines ways in which to test and monitor for Birdshot, and is really useful in helping us understand the monitoring tests we get, and why we get them.

In short, the paper explains that it is critical to diagnose and carefully monitor Birdshot as it can progress insidiuously without any associated pain, and looking just for visual acuity, inflammation or vascular leakage of fluorescein alone, may not be effective.

The authors of the paper review the current methods of diagnosing, testing and monitoring for Birdshot including ERGs, fluorescine angiography, indocyanine green angiography, OCTs, visual field tests and HLA A29 blood testing.

The major finding is that 70% of people with Birdshot have abnormal readings on one of the parameters (the 30 hz flicker) of ERGs.  This is really interesting, as it means that ERGs may be a fairly good way to help diagnose Birdshot.  It also could mean that if we have a ‘normal’ 30 hz flicker result, we may be able to reduce our medication.

This does not mean, of course, that we can do without some of the other monitoring – each system has its uses.  For example, OCT is particularly pertinent if you have macular oedema, and we posted recently about the importance of indocyanine green angiography.  However, it does help us, as patients with Birdshot, understand why all these tests are so very important in ensuring that we maintain our visual acuity and are not under or over medicated, and that our medication regimes are effective.

Read the full article by clicking the link below.

AUTHORS: Comander J, Loewenstein J, Sobrin L

PMID: 21958183

URL – http://www.ncbi.nlm.nih.gov/pubmed/21958183?dopt=Citation

 

Interleukin-5 – a better option than worms?

An interesting piece of research has just been reported on.  The research, undertaken by a team, led by Dr Suzanne Hodgkinson from the University of New South Wales in Australia has found that injecting interleukin-5 into rats with Guillain-Barre syndrome (an autoimmune disease) makes them recover much more quickly, and if given as a preventative measure, ensured they did not fall ill.  It seems that this treatment may also be effective in other autoimmune conditions (Birdshot is an autoimmune disease – perhaps it will work for us?).

The exciting thing about this kind of treatment is that it works by increasing the amount of ‘good’ cells.  Much of our current treatment relies on trying to suppress our ‘bad’ cells.

Even more interestingly, you may remember that we posted about a promising (although rather off-putting) treatment called helminthic therapy.  This therapy involves worms which change your immune response and helminthic therapy is currently being trialled on several different kinds of autoimmune diseases.  When you have an helminthic infestation, your immune system responds by increasing the production of eosinophils which make the cytokine interleukin-5.

Dr Suzanne Hodgkinson says ‘ In this new treatment, it’s a matter of injecting the interleukin-5 and the body does the rest.  It’s both safe and effective and we think inducing the immune response by injection may be more attractive to people than swallowing parasitic worms’.

We say, please hurry up and start trialling this on us Birdshotters!  Anything to avoid worms!!

Read the full article at

http://bloodjournal.hematologylibrary.org/content/119/19/4441.abstract

Birdshot – Getting the right Diagnosis

A paper, written by doctors from the Department of Ophthalmology at University Vita-Salute in Milan, has reminded us of how important it is to make sure that we have the correct diagnosis.  Just because we appear to have typical Birdshot lesions, and are HLA A29 positive, does not automatically mean we have Birdshot.  It is really important to rule out all other possible causes for our symptoms before Birdshot is diagnoses.

The Doctors highlight a case of a 43 year old woman who presented with bilateral (that means in both eyes) vitritis (inflammation of the vitreous body – one of the symptoms of Birdshot) and lesions that looked like the typical birdshot lesions. She tested positive for HLA A29 and was diagnosed with Birdshot.

However, she did not seem to respond to immunosuppressants, and there were some neurological symptoms she was experiencing.  Her diagnosis was re-evaluated, and she was diagnosed with intraocular lymphoma – a very different condition to Birdshot.

The doctors felt it important to write up this case to highlight the importance of careful follow up of patients with chronic uveitis and re-evaluation of systemic symptoms and signs.

Read More: http://informahealthcare.com/doi/abs/10.3109/09273948.2012.689074