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Keylla Patricia Melo

Sandra Johnson Name: Keylla Patricia Melo

Age: 44

Where do you call home? I live in Natal, Rio Grande do Norte, in the furthest east part of Brazil.

Education/Career: I'm a lawyer. I went to law school and later got two postgraduate degrees: one in Family and Inheritance and the other in Social Security law.



Who do you live with? I have no children and live with my parents.

What is a typical day for you? Currently my routine is remote work, but when it is necessary I go to the Forum or to some public or private entity as part of my professional duties.

 

 

How long have you known you are living with FA? I became aware of the symptoms when I was 31 years old, which means that I have been living with FA for at least 13 years.

Are there any others in your family with FA? I am the only one.

Sandra Johnson Describe your transition from walking to walker/wheelchair. At the beginning of the disease, for at least a year, I walked alone or with the support of someone else. But then I fell into the bathroom and had to use a walker. This fall resulted in a fissure in the left hip and, for this reason, I now use a wheelchair.

What do you like to do to stay active and what type of exercises work for you to stay strong? I work and study to stay active, I don't like to exercise, even though I know it's extremely necessary.

Do you have any hobbies or special interests? I love watching movies and dining out.

What is a good trick to make daily life easier? The best trick is to remember that the “neighbor” problem is always bigger than mine.

When FA gets you down, what do you think/do to feel better? I try not to make the same mistake again and police myself when I make any moves.

What is one way living with FA has POSITIVELY affected your life? FA made me see the difficulties that people with disabilities have to overcome daily to be recognized in society and to have a decent life.

What is a favorite motivational quote of yours "It is not because we have a disability and use a wheelchair that we cannot be productive and useful to society."

What piece of advice that someone with FA has given you that encourages and inspires you? I never received any advice. On the contrary, I'm the one who hears from several people that I'm a fighter and that I inspire them.

What is the best advice YOU could give a person who has been newly diagnosed with FA? Embrace your disability and everything will happen naturally.

What is the first thing you want to do when a cure/treatment to FA is found? I want to walk and run again.

Sandra Johnson "I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I try to live without thinking about my disability, but it comes back to my mind when I go to take a shower and I need to transfer to the bath chair, when I need to make movements that require picking up objects with my fingers, when I get dressed and need to stand, among others, but I try to do as much as I can myself. When I can't, I ask for help.



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