MCAS (mast cell activation syndrome) is a immunological disorder where mast cells are released and cause chronic symptoms including and not limited to anaphylaxis. Learn more about MCAS here http://www.jillcarnahan.com/2016/10/31/mast-cell-activation-syndrome-mcas-when-histamine-goes-haywire/
Ehlers-Danlos Syndrome is an inherited connective tissue disorder that causes a variety of symptoms, affected individuals can be either mildly affected or severely affected and become disabled. Learn more about Ehlers-Danlos here https://ehlers-danlos.com/eds-types/
POTS (postural orthostatic tachycardia syndrome) causes an abnormal rise or fall in blood pressure when someone stands up. POTS can cause someone to pass out, you can learn more about POTS here http://www.dysautonomiainternational.org/page.php?ID=30
Nicole has been diagnosed with EDS types 1, 2, and 3, because of EDS she has complications such as POTS, and TMJ. Nicole lives in Chicago with her mom and is need of help to get to see a doctor that costs around $1500 per visit. The doctor she needs to see is the EDS specialist in the USA. At the young age of 3 Nicole would tell her mom that the left side of her body being in pain. Doctors thought I had an ear infection and prescribed cefaclor (an antibiotic used for ear infections) they gave her a dosage amount that was three times higher than normal.
Her body rejected the medication leaving her paralyzed from the neck down. This reaction was due to MCAS (mast cell activation syndrome) but didn’t know this at the time. “No one knew at the time I had EDS, POTS, and MCAS, they told my mother to start looking for a casket.” Nicole has always caught infections easily and was a sickly child.
Nicole’s mother took her to a place where fifteen students stared at Nicole trying to put the puzzle pieces together of what was happening to her. Nicole was still paralyzed from the neck down at this point and every time she would eat she would vomit. Her urine would turn into a jello like texture when she would go to the washroom. Three months of vomiting up food and Nicole it’s a miracle Nicole is alive today. She was on IV’s everyday she was vomiting what looked like a black substance in addition to blood. Her red blood cell count was through the roof leading doctors to believe this is Nicole’s autoimmune disease presenting itself.
She continued her life as regularly as she could after she gained back some mobility. At the age of 13 and into college Nicole was a victim of bullying. She attributes this to being different it was hurtful, Nicole shared about being bullied, “being bullied led to what we know now are flare ups.”
Another time I ended up paralyzed when the doctors gave me another drug called omnicef the doctor didn’t listen to nicole and gave this drug to her anyways. “I ended up with a large golf ball sized lymphnode on the left part of my neck which doctors extracted. Still doctors couldn’t figure out what was going on.”
Nicole recalls, “people would call me a liar and a hypochondriac. People would tell me to suck it up and that there was worse out there. While I was dislocating every joint and fighting chronic pain everyday.” A problem with EDS is the micro tearing in the ligaments that happens overtime.
“I started to experience ‘highs’ of my blood. I started to pass out in school. It was happening around 6-8 times a week. I would pass out and not know what was going on because all of this happened before my diagnosis. Doctors thought I was bipolar, depressed, has anxiety, and a hypercondriac, so they put me on meds. Been through all sorts of different meds since I was 13, 13 different meds actually. People were not nice to me and continued to call me names in school.”
Nicole thought for a long time she just maybe arthritis because of her deformed fingers. Nicole had large wounds and bruises on my body, “People thought I was being abused by my parents.” Overtime Nicole realized she had stretchy skin, and she was flexible to the point of chronic dislocations. For a while it seemed that because of Nicole’s problems she wouldn’t be able to graduate school. “I was put into a special ED class and I loved it. I graduated and went into doing hair.”
Since doctors believed that bipolar, depression and anxiety were the root of Nicole’s problems they put her on dangerously high dosages of celexa. “The dosage was so high one doctor said I should be in heart failure from it.”
“I love hair dressing and decided to get into it. I am good with hair and colours.”
Over time around the age of 19 Nicole noticed the severe pain in her jaw. “People would avoid me in hair school because they thought I was a complainer. I tried to explain to teachers why I was missing school. At this point I had been sexually assaulted and couldn’t figure out what going on with me. I lost all my friends. I decided to save up my moment at age 24 I was diagnosed.”
Nicole had ankle surgery to repair the torn tendon in her ankle. “Doctor said he had never seen a leg like mine, the skin wouldn’t close, my ankle needed to be stapled crisscross, and had to be re-stitched three times.”
She began to realize she was more flexible than the average person. Flexibility maybe a new fad or an old one that is back in the lime light, however, being more flexible with something like EDS makes you rather clumsy. It took a long time to get a diagnosis, my family and I found out at 24 I have EDS types 1, 2, and 3 and POTS. “I have learnt I need to tell doctors exactly what is going on. And make sure they know to not give me any drugs related to those those two drugs that have caused me to become paralyzed.”
Nicole needs our help to get to a doctor to that knows EDS. She is in need of around $8000 let’s help Nicole reach her goal. Us fellow zebras need to stick together.
Nicole shared with me, “My inspiration for GoFundMe is to become the face of EDS in Illinois to help other doctors become educated by the superior ideas doctor and it could also benefit other zebras in the area to get at least some type of treatment instead of doing completely nothing. I want to be able to see doctors in Illinois to give us a chance or some type of treatment because if dr. Chopra has contact with my Dr he can direct the doctors in Illinois to help other people in Illinois and what to do because he’s the founder.”
Nicole you have been through a lot and you are a tough cookie. I am honoured and blessed to call you my friend. I am hopeful for you to get the help you need. I give you permission to use this writing on your gofundme. Please link it to the blog post. You aren’t alone. Us zebras need to stick together.
You can donate to her gofundme here https://www.gofundme.com/nikkis-med-testingresearch-funds
Hopeful for you always.