BENEFITING: Dysautonomia International
EVENT: Run for DREAMS
EVENT DATE: Oct 08, 2016
Marissa Gaines wrote -
A Fun Run/Walk is being held to raise awareness and funds to support research efforts through Dysautonomia International and I would love for you to help with these efforts in any way you can!
As many of my family and friends know, I have had a lot of health problems over the years. While they don’t know exactly what my Primary Diagnosis is, they do know that I have POTS (Post Orthostatic Tachycardia Syndrome), a form of Dysautonomia. Dysautonomia International points out that “While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.” I am hoping that awareness of this medical condition and of my story will make people “understand” why I feel like I do each day and hope that better treatment options will become available through resesarch efforts that will help me and everyone else affected by this debilitating illness!!
I have had flares of POTS for almost seven years that went UNRECOGNIZED by doctors for about six years and has exaggerated my other medical condition that leaves me susceptible to Septic Shock (which happened twice a year’s span). Although I’m taking medication to increase my blood pressure and lots of SALT, fluids, and physical therapy has helped me, I am 19 and still do not have my driver’s license and I still need a shower chair to shower. I often back out of events or anything that would be a “normal” activity for someone my age because this illness makes doing active things for very long very hard and most people I am with do not understand this because I might look fine on the outside but my body is struggling on the inside and works unpredictably.
I’ve been through a lot over the years, and to better understand this, please read how POTS and my other Undiagnosed immune system issues has caused me to almost lose my life twice and has affected many years of my life:
Age 8 - I had myoclonic jerking every morning that resolved with seizure medication that was presribed when I was 13. It was hard for me to explain this symptom to my parents and I just thought it was normal, therefore we didn't see a doctor about it.
Age 11 – I had stroke-like episodes with one-sided weakness that went on for a month.
Age 12 – I started having minor POTS symptoms, such as dizziness, feeling overheated and flushing.
Age 13 – I had months of one-sided weakness, skin discoloration, chest pains, excessive sweating, legs/feet/joint swelling and then after passing out a couple of times they did an EEG and found seizures, but that did not explain my all of my symptoms. Looking back, it is very clear that I had my first real POTS flare at this time but not one doctor could figure out what was wrong me!
Age 15 - Within 24 hours of getting sick, I developed hypovolemic shock and sepsis due to salmonella and was admitted to the ICU.
Age 16 – I had ARDS/lung failure and septic shock and they never found an infectious source, and I was on a ventilator for 25 days and in the hospital for 37 days. A Lung Biopsy did not show anything and a Bone Marrow Biopsy was abnormal with hemophagocytosis. Yet in the end, they still do not know why my organs failed and I almost lost my life.
Age 17 to current age of 19 - After an almost complete recovering from the ICU stay at age 16, I developed muscle weakness, low blood pressure, pain, and deconditioning to the point to where I couldn't drive or shower without a shower chair and lost my independence.
After seeing many many doctors with no answers, a person with Dysautonomia told me she thought I had this and I needed to see Dr. Numan, a cardiologist specializing in Dysautonomia. Also around this time, a Rheumatologist noted I had joint hypermobility/EDS III that later I found out is seen frequently with people that have Dysautonomia. After 14 months from the start of the most recent POTS flare, Dr. Numan did a Tilt Table Test and diagnosed me with POTS and I was able to get some treatment that is helping me live a more normal life, but I am still not where I need to be. I was able to have an almost full recovery after being on life support with septic shock, yet I still have not been able to recover from this lastest POTS flare that started in Setpemeber 2014!
It took too long for me to get a POTS diagnosis and treatment is not effective enough to where I can still be a regular 19 year old. I live in a large city that has a medical center with some of the top doctors and yet none of them were able to figure out that I had POTS for YEARS and were not able to help me like I needed. I missed out on a lot and I did not have a typical teenage experience.
These are the reasons I am participating in this Event on Octoger 8th to raise funds for Dysautonomia International and hoping that others will join my efforts!