Dysautonomia Can’t Dampen This Girl’s Ambition

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Nisa when she met with Patient Worthy team member, Kathy

In 2013 Nisa woke on the floor needing stitches in her head. She had no memory of falling. Looking back that was the beginning of her journey with POTS, which lets your blood pool, making you dizzy and light headed when you stand up.
Nisa took photography as an elective in High school, and in her school system was allowed to take several college level photography courses. She grew to love it after a course in black and white photography and after graduation she enrolled in the Savannah School of art and design.

She eventually transferred and came back to the local college where she had started in high school. She did an internship at Walt Disney World, and loved it. She then landed her dream job; a photography position at Disney. She moved there and was loving her work despite the fourteen hour long days.
Then she began to have symptoms.

She felt sick. Light bothered her. She felt disconnected from her legs. She told her roommates that she had a floating feeling. She was unsteady walking. She went to urgent care multiple times. She was only told these were symptoms of migraines, but though she had headaches, there were all these other symptoms too.

After multiple doctors visits and missing work her parents asked her to come home where they could take her to specialists. She saw neurologists, cardiologists, and had many tests. Eventually a pediatric cardiologist diagnosed her with POTS and began working to try to get her stabilized.

She has had some improvement in symptoms but she is definitely not back to where she was. She cannot drive at night, she cannot work because of the unpredictability of her symptoms. She can stand up and faint. In fact standing up, fainting, coming to, and needing to get stitches from her fall, was her very first symptom. She is still in shock and feels her identity is in flux.

She was so happy that both her Mom and Dad came to the appointment when the doctor explained about POTS because when you have such changing symptoms  and so many health care personnel are skeptical, you begin to wonder if anyone believes you. She is still getting used to the prospect of an unknown future.

POTS came on suddenly for her, could it go away just as suddenly?

She’s not even sure when she feels odd if it’s part of her condition or if it’s a side effect of a medication. How can she put this into perspective in her life? She went after both state and county recognition. The state of Virginia gave her three different reasons for not following through but Fairfax County government supported her request to declare October as Dysautonomia awareness month. At the ceremony her family and online POTS friends were there to support her too. She gave a wonderful speech, explaining POTS and the reality of living with it;

I had to wait months to get to see a doctor that could help me. Once I was examined, I was put on a bunch of different kinds of medicine – so many that I had to take extra drugs to combat the side effects of the original medicine. Frequently, the side effects are worse than the POTS disease itself. Other times, the meds do not work and you have to start all over, it is not a one size fits all solution. It may take months or even years to find the right combination of medicine and treatment or even the right doctor for you.
Unfortunately, this disease does not care. POTS does not care if you have got your life figured out and it is going great. POTS does not care if you have plans. POTS does what it wants.
No one tells you that you will spend your days on the couch staring at the ceiling because you have watched every show there is on TV. No one tells you that you will lose most of your friends because they do not believe you are sick and had to cancel meetings a few times, so they just stop inviting you to events altogether. No one tells you that you are always being judged, especially if you do not look sick, even if you have to sit down on the floor in the middle of the aisle because your heart rate is too fast and you are dizzy and cannot breathe.
Let me assure you that I am not at home having a party, I am sitting there in pain so bad that most people would be in the emergency room. I am not faking my illness, I am faking being well enough to go out and do things like a “normal” person. I am sorry that some people do not understand invisible illnesses and that they are called INVISIBLE for a reason, but at the same time, I am also glad they do not have to experience this themselves.
I am however, even sorrier that there is not enough information regarding Dysautonomia or help out there so that many people who have it may not know they have it and will not be diagnosed or treated for a very long time. For this reason, I have made it my mission to make a difference and raise awareness so that others can get the help that they need. There is no cure, but there is treatment available. I was one of the lucky patients that was able to be diagnosed and now that I have finally found the right doctors and combination of medicine and treatment I am doing much better than I was a few months ago. I’m still unable to work or live the “normal” life I once had but I am on my way to starting a non profit of my own to help others like me. And though my life is forever changed, if I can at least help someone else then I consider my life a success.”
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At the proclamation ceremony (Nisa is in the blue pants)

 

dontQuitNisa has always been a go-getter. She started the process of getting the petition signed. She started volunteering at a cat shelter two days a week and is taking art classes at a community center. She is making connections with others online, and now in person, who have this rare condition. She is designing T-shirts (she did a dozen designs for Invisible Illness week). She is a graphic artist as well as a photographer – and maybe –she can figure out a way to work, that works around her illness. One thing for sure, Nisa will not quit!


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