The Importance of Patients in Research of Rare Diseases

It seems very apt, when we have just finalised the date for our  first Birdshot Patient Day for Saturday 11th September 2010, to come across some research by EURORDIS (the EURopean Organisation for Rare DISeases).  EURORDIS is the voice of ‘patients with rare diseases across Europe’.

The survey has found that rare disease patient organisations (such as BUS, the Birdshot Chorioretinopathy Uveitis Society) play important roles as catalysts for research on their respective diseases. They can also be valuable partners in identifying the gaps and supporting early research in areas not covered by the public or private sectors.

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Alendronic Acid – Take a break!

Take a break to prevent a break!

“Don’t use it for more than five years!”

We recently came across this article about the long term effects of Alendronic acid and thought we should bring it to your attention.  The long and the short of it is that it is not a good idea to use the drug for periods of longer than 5 years,  as it has the effect of making your bones go brittle and actually causing breaks.

Naturopath,  Jacob Schor, ND, FABNO,  writes:

“The drugs that have been used with apparent success to treat osteoporosis may now have a problem. Alendronate may weaken bone and lead to increased fracture risk. Continue reading

Bevacizumab/Avastin

http://www.ajo.com/article/S0002-9394(09)00410-3/abstract

This study looked at the the effect of intravitreal bevacizumab (Avastin; Genentech Inc, South San Francisco, California, USA) on visual acuity and macular thickness in patients with inflammatory choroidal neovascularization (CNV) or cystoid macular edema (CME).

The study concluded that Bevacizumab appears to stabilize the eyes with inflammatory choroid neovascularisation or cystoid macula edema.

This type of treatment is only available in the UK on the NHS for people who have wet AMD. If it does help people with choroidal neovascularization (CNV) or cystoid macular edema (CME), (possible complications of birdshot chorioretinoapthy), as this research would indicate, we need to take action and lobby for it as a possible treatment.

A study of Irish patients with birdshot

This paper was given at the Prague Ocular Inflammation Society Congress in June 2009 by Dara Kilmartin Consultatant Ophthalmologists at Royal Victoria Hospital Dublin. It would seem to suggest that getting an early diagnosis is important.

Disease severity and outcomes with immunomodulation in Irish Patients with Birdshot Chorioretinoapthy. D.J. Kilmartin, A.C. Hogan, S. Jungkim, P. Kenna, Dept of Ophthalmology and Research Foundation, Royal Victoria Eye & Ear Hospital, Dublin, Ireland Continue reading

Contrast Sensitivity in patients with Birdshot

This is the synopsis of a study that was published in October 2008.    It concludes that contrast sensitivity may be a useful measure for clinical studies of birdshot chorioretinopathy and for monitoring patients with the disease.  The synopsis is taken from the Pubmed site which can be be found at http://preview.ncbi.nlm.nih.gov/pubmed.

Kappel PJ, Monnet D, Yu F, Brezin AP, Levinson RD, Holland GN. Oct 2008. Continue reading