I am Adham Elkhouly, the Egypt Ambassador for NF2 BioSolutions. I live in Cairo with my father, mother, and two sisters, who, all, do not suffer from Neurofibromatosis Type 2 (NF2).
I had to endure many disabilities at a very young age: half-blindness, deafness, and balance problems. Many of these disabilities remained latent, so, in the eyes of society, I was a weird, abnormal person. Indeed, people can’t understand what cannot be seen. I remember being bullied a couple of times for my bandages after brain surgery and by how weird-looking my scars were. Academically, I had to support myself and rely mainly on self-study up to engineering school. I remember in high-school I had to endure all these disabilities, adding to them chemotherapy and multiple absences for treatment.
NF2 is more of mental torment. I had to endure the torment of becoming deaf all of a sudden and losing all support from my peers. Totally alone and isolated, I had to endure the sight of people talking and laughing, while I was just there…..smiling. I had to endure the feeling of being the only person with this thing. A thing that I didn’t inherit. It just breached and stayed like an uninvited guest. A thing that isn’t researched or known in Egypt, even among many medical professionals.
Now, if I have one wish, after all, I’ve been through, I’d wish that no one would suffer the way I did or see the horrors that I had to see. there is a new non-profit organization that works on gene therapy and gene replacement called NF2 Biosolutions. I feel absolutely positive about this organization as it was created by NF2ers to treat NF2. So, if they didn’t create a cure in my lifetime, future generations would not have to suffer the way I did. All donations for this mission will count, all donations will be seen, and all donations are ultimately saving a life.
My contact: adham@nf2biosolutions.org