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.
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