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Rare Diseases has been our pillar.

My journey started in 2001, I would get a series of intense head pains worse than a headache or even a migraine, I could never understand why or what the cause was however it generally happened when I used to sing as I am a Soprano Soloist. The pain generally would start when I hit a high note and would become so bad that I had to stop singing and sit down. at the time we did not think anything of it and after I Matriculated at the end of 2001 I did not sing as much anymore as I left school to start studying to become a chef. Life carried on as normal for me during my 2 years of studying nothing major happened with the head pains. I graduated end of 2003 and got my professional cookery diploma; it was at this point I wanted to get contact lenses as being in the kitchen traditional glasses that tend to mist up often did not seem to work very well.

I went to get my eyes tested and the optometrist found my optic nerves to be dangerous swollen and then I was immediately sent to the ophthalmic surgeon for further testing. They figured out that I had too much pressure around my brain which was the cause of my optic nerves being too big. I was then sent to a neurosurgeon who tried everything to bring the pressure down by diets and taking me off curtain medication, unfortunately all this failed and they did a series of painful lumber punctures to try reducing the pressure and still no luck. It was this point where they decided to put in a LP shunt in June 2004, this was the most painful experience I had ever had however it has helped me so much, since the surgery my eyesight has improved and the head pains have become much less frequent then the point at which I discovered I had IIH. Back in those days we knew a lot less then we know today. I have been extremely fortunate that I haven’t had major issues with my shunt till recently.

Having this Shunt inserted has enabled me to have some sort of a normal life, I am currently a successful Chef and have been working for 18 years in this industry.

I have been gifted with being able to have 2 beautiful children after being told that I would be unable to have kids due to some sort of medication I was on, it just shows Doctors are only human and God knows best.

I have my good days and bad days, but I am profoundly grateful that I had the shunt placed when I did, it gave me the way to having some sort of a normal life, a family life and a professional life. I also have asthma and recently last year was diagnosed with bipolar.

I am doing well on my medication and living a much more positive life now. I am grateful for Rare Disease south Africa and I have joined a group on WhatsApp with many other amazing people with this rare disease, my nephew that is 9 years old was diagnosed in 2019, My cousin Chante also has IIH and she is an ambassador for IIH south Africa.

Being part of this group has helped me understand IIH so much more, I also have done more research to try understanding it more. I am profoundly grateful to Rare Disease for being around, you have helped me be more positive and to understand that this does not make me any less of a person.

IIH does not show on the outside so no one really knows the battle we face everyday of our lives to live a positive and productive life, some days the pain in my head is so bad I cannot see or do anything ,yet I get up and go to work to provide for my kids.

This is my story of living with Idiopathic Intercranial Hypertension, Thank You Rare Disease for being there for me and thank you to all the wonderful people I have met along the way, please continue to do the great work you are doing.

In August 2020 I received my Rare Bear which was donated by digital republic consulting .

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