MarianneName: Marianne Hakim

Age: 32

Where do you call home? Beirut, Lebanon

Education: B.A in advertising & marketing and Masters in media studies- My thesis which is the backbone of Friedreich Ataxia Lebanese Association (FALA) — an NGO I established — gave me the opportunity to meet and connect with people, who are affected, like me, by FA in my country. The main objectives are to spread awareness about the benefits of the therapies available to medical experts as well, connect people with FA to doctors and therapists and offer them support, orientation, and care, last but not least encourage inclusion in public places, educational institutions, and workplace.

What's a typical day for you? Well, my days are crazy. I wake up at 7 to get ready for work (I work in a TV productions company); I finish at 2 to go and do different therapies; I am blessed as the management was flexible enough not to let my physical activities and energy span stand in the way of my employment. I finish daily around 6 and either I head to meetings for FALA or continue working at home. I go to sleep very early midweeks. And I take advantage of the weekends to spend them with my family, boyfriend, and friends.

Marianne CollageHow long have you known you are living with FA? The symptoms started at 17 but it took the doctors 3 years to set the diagnosis when I went to France and had a DNA test.

Describe your transition from walking to walker/wheelchair. I use a crutch from one side to walk and someone assists me from the other side, as using a walker in my country is quite difficult because the infrastructure is not inclusive and public places are not easily accessible. (no ramps) I use the wheelchair when I travel but I try as much as possible to walk when I can.

What do you like to do to stay active and what type of exercises work for you to stay strong?  I do one physiotherapy session, 1 speech therapy session, 2 functional training sessions and 2 other aquagym sessions per week.

Do you have any hobbies or special interests? Scouting, piano, and sports

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Don’t be discouraged by other people’s judgments, no one is YOU and don’t believe everything you read on the internet; the important thing is to stay active and do things at your own pace, don’t compare yourself to other people, doing things differently is not a bad thing after all.

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