Ideopathic Retinitus, Vasculitis, Aneurysms and Neuroretinitis
What is Ideopathic Retinitus, Vasculitis, Aneurysms and Neuroretinitis?
IRVAN syndrome is a rare disease characterized by retinal vasculitis, retinal aneurysms and neuroretinitis. Patients are usually asymptomatic at diagnosis but over time, proliferative changes, macular hard exudates, macular edema and retinal vascular occlusions can lead to severe vision loss.
IRVAN syndrome is a rare disease characterized by retinal vasculitis, retinal aneurysms and neuroretinitis. Patients are usually asymptomatic at diagnosis but over time, proliferative changes, macular hard exudates, macular edema and retinal vascular occlusions can lead to severe vision loss.
Last updated 30 Mar 2018, 01:44 PM
30 Mar 2018, 01:44 PM
When I was 15 years old, I was diagnosed with IRVAN Syndrome. Something you and I have been told is considered 'incurable and progressive'.
It all started with a vitreous hemorrhage (A big blotch of blood trapped in the vitreous gel of my eye). I was very scared, as the doctors told me that my eyes were bleeding internally, but that they'd never in their lives seen this happen to someone so young. The blood spot was big and obtrusive, blocking my vision terribly.
In a rush, we were transferred to Tennessee Retina (an technologically advanced doctors office located in the capital of the state), hoping that they would understand the situation.
They didn't.
A full day of scans and 12 vials of blood drawn later (to test for diseases) - we were left with no answers while my eyes continued slowly filling with blood.
During the month that followed, The vein that had ruptured in my left eye bled out completely, leaving me with a frighteningly huge blood spot floating around my vision.
Then, we received a call from the Doctor, saying that he had consulted with several colleagues all around the world, and that he had an idea about what could be going on with my eyes.
Before the doctor saw us, my eyes were scanned once more, revealing to us that in just under two weeks, the issue that was developing within my eyes had nearly doubled in size and severity.
That was the day that I was diagnosed with IRVAN Syndrome. (January 2015)
Since that day, I have been sort of a test subject for treatment. One method that I've tried over the course of the past two years is getting direct eye injections once a month. I have tried injecting two different medicines so far: Avastin, and Lucentis. Sometimes the injections are painful, but I just want to find a cure.
These injections have cured my RIGHT eye of IRVAN Syndrome and they are no longer necessary in the right eye. I do, however, still receive them once a month in my left.
I have also tried several other holistic means of treating myself, and they are as follows:
Dietary Supplements:
1) 'Christopher's Bilberry Eye' - two daily
2) 'Dr. Whitaker's Vision Essentials Gold' - two daily
3) 'Dr. Whitaker's Ocular Pressure & Retina Defense' - one daily
Other Remedies:
1) 2 oz daily of Ningxia Red (a juice containing Goji berries, Young Living essential oils and other super fruits) for inflammation. This is a product of Young Living Essential Oils.
2) 'Christopher's Herbal Eye' (A daily eye wash that contains pepper - it stings, but not near as badly as the shots),
3) An essential oil blend of Frankincense and Helichrysum to rub around around my eyes daily (Just above the cheek bones and just below the eyebrows)
One of these things, although I'm unable to pinpoint which exactly, seems to be helping! The inflammation in my left eye has gone down dramatically and has stayed stable for the last three months! This is a very delicate time in my healing... I don't want to stop doing any of these treatments because I'm not sure which one is working, and IRVAN is prone to get bad again quickly. I would highly recommend trying as many of these as possible for our condition!
Clinical Trials
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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When I was 15 years old, I was diagnosed with IRVAN Syndrome. Something you and I have been told is considered 'incurable and progressive'.
It all started with a vitreous...
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IRVAN Syndrome
Created by RISSY | Last updated 30 Mar 2018, 01:44 PM
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