Hello, my name is Jake and I am a disabled individual suffering from Hyperadrenergic Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia for about 2.5 years now. The reason for this GoFundMe is to hopefully raise the required funds to see a new medical “team” to get to the root of my health issues, and to treat the root cause or causes to give me a chance at getting my life back or as close to it as possible. Because of insurance issues, being financially ruined from my medical issues and subsequent medical debt, and healthcare issues unique to the United States, I will need help to afford this journey so I can get the testing and treatment needed to defeat dysautonomia!
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. Hyperadrenergic Postural Orthostatic Tachycardia Syndrome(POTS) is categorized by the excessive release and cycling of norepinephrine/adrenaline in the body causing rapid heart rate, orthostatic hypertension, and a myriad of other symptoms. POTS affects over one million people worldwide with hyperadrenergic POTS being the less common variant among the population.
My symptoms include:
-Blood pooling (blood vessels dialate instead of constrict; see picture of my feet for reference)
-Tachycardia (fast, beating out of chest due to poor bloodflow to the heart)
-Extreme light and sound sensitivity
-Poor temperature regulation (feeling constantly hot from the constant adrenaline)
-Poor eyesight and eye pain (due to lack of proper bloodflow to the eyes)
-Constant thirst, poor liquid retention
-Difficulty standing or walking (currently use wheelchair and other mobility aids)
-Constant general pain and weakness
-Dizziness (particularly when upright)
-Increased allergies / Mast Cell Activation
-Sleep issues / insomnia
-Indigestion and other gut issues
-Difficulty speaking for long periods of time
-And many more
Other diagnoses include:
Dysautonomia is a debilitating illness that needs more attention and research in the medical community. What we do know is according to a study by Dysautonomia International, around 18% fully recover from dysautonomia. This may not seem like a large percentage, but it is a significant one. One common theme for those that recover - they find the root cause or causes that led to their dysautonomia and when that gets addressed and treated, it leads to recovery.
This has led me to search for a medical “team” to find and address my root cause or causes which as of right now are unknown. I am happy to report that I have found that team which includes a chronic illness specialist, a primary doctor, and more who all have some experience with dysautonomia. This team already has an idea of what may be going on with me and is very confident that they can help me find the root cause(s) of my heath issues and get my life back.
Unfortunately, this is where I need your help. This condition has financially ruined me and I am disabled and unable to work or live alone. My medical debt is currently over 45 thousand dollars and it continues to climb. I had several misdiagnoses before finding out I had hyperadrenergic POTS and as my health deteriorated I lost my home, my job, and I had to leave school with only a couple of classes left in my Master’s degree program.
Because of various healthcare related issues, this journey to get my life back will be expensive. My team is working with me as best they can but it will cost money and the testing that is necessary to locate and address the root cause(s) will be pricey. Here is a breakdown of some of my future costs. I do not have all of my costs at this point because I am awaiting preliminary testing and I will need some money to go to my next appointment to go over everything and discuss treatment options and further testing. Here is what I have so far.
Appointments with chronic illness specialist + more - $4000
* - Subject to change. These values may potentially be higher depending on what I have and what the treatment entails. Additional testing and treatment is a rough estimate and will be updated following subsequent appointments.
Why am I only asking for $10,000 then? I have decided that although my total costs will likely be higher than 10k that this would be the goal for right now. It is already a steep goal to hit and if it eclipses that goal that would be even better.
I finally found my chance to get my life back or as close to it as humanly possible. I have a way to get there but I’ll need your help. I am putting it all out there and asking for help if you can. Will you help me defeat dysautonomia and finally be healthy again?