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July 2018 Update - Visual Snow PDF Print E-mail

Visual Snow Research – Where we were, where we are and where we are going

 

No matter if you have a mild case, or a severe case, Visual Snow is probably never far from your mind. It is definitely not a condition that is easy to escape because we see it everywhere. If you are like me, you want research to move faster and have more information coming in. Trust me, I feel you! It’s so hard waiting and waiting days, months and years.

 

Here is what we know right now:

https://onlinelibrary.wiley.com/doi/full/10.1111/head.12378

 

Here is an excellent link to search “Visual Snow:

https://www.ncbi.nlm.nih.gov/pubmed/

 

For the current MRI study being conducted in London the doctors have scanned 15 patients and 12 controls.

 

As far as the diary/questionnaire study there have been 1100 patients contacted and asked to participate, and only 150 have returned the information asked for. This phase of research has taken a back burner to the MRI at this point. If you are still interested in participating, they are still taking applicants, but it may take some time to receive a response back from the doctors. You can find information on how to apply at http://www.eyeonvision.org

 

What does the near future hold for research?

 

Dr. Puledda, Prof. Goadsby and team are moving forward with a study involving genetics and cerebrospinal fluid analysis for visual snow but are still waiting for ethics approval for that. It took a very long time to receive approval for the last phase of research, so we are in a wait and see period.

 

What can you do to help?

 

Currently visual snow test subjects have been coming from the London, England area, so if you are in that area, you can play a crucial part to the research, potentially. Please reach out to me, Jen Ambrose, if you would like to be in touch with the doctors and are in or near London.

 

If you are out of the area, we are looking for financial support to help continue the research. Medical research in expensive and lengthy, and Eye on Vision Foundation has done it’s best to support the research, but funds have dwindled greatly over the past few years, and this has caused delays in research. The more doctors assigned to the research the faster it will move for us. Donations can be made on a one-time or a monthly basis through http://www.eyeonvision.org. You will see a PayPal link. Remember that this is a tax-deductible donation as we are a non-profit. All donations will go straight to the research. There is no overhead for Eye On Vision, so all monies are donated to the research.