Our expert says:
There are a few different components to your question:
Von Hippel Lindau syndrome is a rare gentic condition that can be 'handed down'. If you have children have they been checked? Numerous systems of the body can be affected by this condition including the visual, renal, brain, central nervous system and cardiovasular systems.
You mention that your husband had a scan. There are different kinds of scans, some more appropriate than others for this condition. If this is the only investigation he has had I would suggest consulting with a specialist that is well acquainted with VHL syndrome for a more comprehensive 'work up'.
Remember that as time passes new symptoms from different causes can occur and need to be properly investigated to rule out progression of the condition. I would suggest he be fully investigated for the possible causes of the 'epileptic like' symptoms as this is not one of the more typical symptoms of VHL syndrome.
Your husband's stress level will undoubtly be impacting on his general well being (as well as the well being of the whole family) and, quite probably, although indirectly, on the VHL. 'Stress' is a condition that can very often be well managed with the appropriate lifestyle modification interventions including exercise, dietry modification, relaxation techniques, appropriate supplementation and lifestyle coaching.
Suppressing the symptoms of stress with things like high sugar intake, excessive alcohol, high intake of processed and refined foods and smoking, or even anti depressants, of example, will more than likely aggravate his condition significantly.
Unfortunately, there will not be a quick and easy solution to this problem and I can only hightly recommed to you urgently consult with a medically trained health coach to assist with over all management of your husband problem.
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