My rare disease journey

The story of Fatimah

My name is Fatimah Aderohunmu. I’m 23 years old.

I was diagnosed with a rare disease called muscular dystrophy warrior.

Muscular dystrophy is a rare condition that weakens the muscles over time and it is a rare genetic condition but I didn’t inherit mine because none of my family members has the condition.

Genetic conditions are passed from a parent (or parents) to their child. In muscular dystrophy, a gene change prevents the body from making the proteins needed to build and maintain healthy muscles.

There are different types of muscular dystrophy though I don’t know the type I have yet each type begins at a different age and may cause mild or severe muscle weakness.

The sadly part of the condition is that it has no cure for now and it was a difficult decision for me to accept it when I was told about it but I accepted my fate because I believe God has a better plan for me and he knows I am capable of taking the challenge.

I was very athletic and smart as a young child and slowly I started to become slower and weaker until I went to a hospital for consultation in 2011 and I was told there was nothing wrong with me but I knew there was something wrong with my body system but I couldn’t figure it out because I couldn’t do things on my own anymore and that’s was how I started going from one hospital to another, from using different herbs to Chinese drugs to Indian drugs and so on but still no changes until I was told I have muscular dystrophy when I went for another consultation some years back.

People with the condition can gradually lose the ability to do everyday tasks like walking, sitting, and other things like that.

The progression of the condition is very unpredictable.
There could be times where I just rapidly deteriorate and there could be times where It is relatively stable for a long time.

With muscular dystrophy you need assistance with everything, getting up from a chair, using the bathroom, taking a shower, preparing meals, and everything.

The loss of strength has impacted every relationship I have had because I can’t be as social as I would like to be, I can’t go out with my friends and it affected my daily living in some ways, for example, if nobody is home, I don’t wanna drink any liquid because who is gonna help me get to the bathroom?

Everything with this condition is kind of a race against time because you don’t know how fast your condition is gonna deteriorate.

I don’t know if a year from now if am gonna be able to keep doing things and that’s what worries me the most because the future is uncertain and my parents are ageing and siblings are not going to be with me forever and I don’t know how long I’m gonna be able to depend on them to take care of me and what am I going to do in the future?

To be honest, being disabled, I have been introduced to a whole new world and the journey has not been an easy one but I am just grateful for the family and friends that have been my support system during the hardest tribulation of my life.
I am thankful for the people that have made my life easier in this love-starved world. I love and appreciate you.

But guess what, I am stronger than muscular dystrophy because I am a fighter, I am so full of life, energetic.

My hope for the future is that the medical community will be able to come up with something to improve the lives of people living with muscular dystrophy and rare condition.

Thank you…