Imagine being diagnosed with a Dystonia; neuro-muscular disorder, at the age the tender age 10. An age where a child is supposedly dreaming of riding rainbows on a flying unicorn, Fatima was diagnosed with a rare disability called Dystonia. It is a disability about which people literally have zero awareness. So we caught up with Fatima to hear how she has coped up with Dystonia for almost two decades, what has her treatment been like and how integral has the role of her support system helped been in dealing with these life altering changes.
SiddySays: What is Dystonia, what are it’s symptoms and when were you diagnosed with Dystonia?
FH: Dystonia is a neurological disorder that causes excessive, involuntary muscle contractions. These muscle contractions result in abnormal muscle movements and body postures, making it difficult for individuals to control their movements. The movements and postures may be painful. Dystonic movements are typically patterned and repetitive. Moreover, Dystonia can affect any region of the body including the eyelids, face, jaw, neck, vocal cords, torso, limbs, hands, and feet. Depending on the region of the body affected, dystonia may look quite different from person to person.
I was 9, when the symptoms started appearing in my leg and neck. It took almost one year for doctors to rule out what it was. Finally, in Karachi Agha Khan Hospital, through rigorous testing I was diagnosed with Neuro Muscular Dystonia (Focal and Generalized).
Then at the age of 12, I developed Dysphonia (Vocals) with an improvement in my leg.
Let me tell you what Dysphonia is! Dysphonia is the medical term for a voice disorder. Muscle tension dysphonia (MTD) is one of the most common voice disorders. It occurs when the muscles around the larynx (voice box) do not expand when we talk, therefore hampering the voice box to effectively work. Thankfully neither I’m deaf nor dumb, so we traveled to the USA to experiment with botex injections that help me speak.
At the age of 26, I had a relapse in my leg and the symptoms of Neuro Muscular Dystonia started reappearing, and it has been to this day that I am actively working on combat it.
Dystonia, basically does not have a permanent cure (at the moment) because I am a part of an active research in Harvard, Germany and some other European countries because it is very rare for children of Asian descent to develop Dystonia and is mostly common in with children with Jewish ethnicity.
Focal Dystonia effects a single body part, for example, the neck.
Generalized Dystonia effects the torso and at least two other body areas, frequently the limbs.
SiddySays: Are there any treatment options available in Pakistan for children and adults with Dystonia? And have you devised an every day plan for yourself to combat Dystonia.
FH: In Pakistan, we have very limited options for treatment
- I get my neck and shoulder botex easily with my Neurologist, Dr. Amir Ikram
- Medicines are available but my supplies come from the USA as they have adjusted to my body.
- For Dysphonia (Vocal Injections): No one in Pakistan have seemed to work on me like the one in Boston. I even tried getting treated in Singapore but that didn’t work either. However, I have heard that India has many professionals in this field but unfortunately due to the political conflict between us and our neighbour, we face trouble with Visa processing.
- Gym or physiotherapy works for me
- I am trying EMS training for my recent leg re-lapse and so far it’s been a hit and trial experience
SiddySays: How do you cope with the emotional and mental aspects of living with Dystonia? Please share any tips.
FH: I am very blessed to have a very strong support system from my family and friends, but especially my parents. Although my mother has been a very strong and constant support for me and has taught me to be independent, my father has professionally driven me take my career head on. Also, my siblings have always been by my side in my lowest times and have encouraged me to fight through. Moreover our extended families from both my maternal and paternal side have been supportive.
I feel you are only mentally and emotionally stable with disability, if your surroundings accept you and having a supportive family plays a major role in pushing you to be accepted by the society, which obviously is a long and tedious process. So, in spite of our struggle as a family and my own for the past 17 – 18 years, I’d say that only 50% of people have accepted me with my disability.
SiddySays: How have you have been handling challenging situations at your workplace? And how welcoming have they been towards your disability?
FH: Well to begin with, workplace behavior comes a lot later because I had to face a very tough time my school and university days as a child and as a teenager because as a society we lack empathy. So it took a lot of time and energy to be feel “accepted” because I had to prove myself to everyone to see me beyond my disability. Unfortunately, our society looks down upon children with special needs. However, I felt a certain kind of semblance later on, both in my school and university days because of some very amazing mentors who helped me polish my skills and personality.
Finding a job in Pakistan is tough especially when you don’t have a reference card to play and on top of that nobody wants to see you beyond your physical appearance (especially in my case). So I would not be even called for the first interview. However, the company that I am currently working at is a global organization who are open to working with everyone. But even then my ability to work and deliver has been questioned time and again and I have had to prove my credibility. Most of the senior management is acceptable and emphatic towards my challenges at work and that is all that matters.
SiddySays: Are there any groups that talk about Dystonia in Pakistan and help spread awareness for the less aware?
FH: I am a a part of the Dystonia Foundation and Dystonia Europe and both of them are internationally based. With a lack of awareness and education around Dystonia, I run a blog where I talk about my struggles, how to build a healthy mindset if you have a disability and more importantly spread awareness about Dystonia and Dysphonia. I want people to treat people with disability as a human being because nothing in life is impossible.
SiddySays: You’ve become a brand ambassador and have openly talked about your struggles, so how do you manage to positive in spite of everything?
FH: It is not easy to remain positive and there are times when I give up and become very negative, but then I take a step back and channelize my energy and I’d like to credit my family for that. And I have some amazing friends to discuss all my issues with. When you know that you have someone to bounce back to, you feel better. Many people do ask me, how I am so full of life and manage my life, I tell them I embarked on this journey of self love and healing from a very early stage in my life, it’s all about the mindset because with it comes inner peace. And once you’ve attained that position in your life, you can fight as many battles as you want.