Elizabeth is a 13-year-old girl struggling with an illness called POTS Dysautonomia and two other branches of Dysautonomia called Vasovagol Syncope and Migrinal Syncope which causes her to pass out and a few underlying illnesses that have come with it. This illness has taken over their lives and at this point she has suffered from 12 concussions. Elizabeth was diagnosed in 2016. Since diagnosed she has been hospitalized several times, sometimes for a day, sometimes many days, in addition to numerous visits with specialists trying to find out the severity and the underlying issues that can come with this disease.
Since being diagnosed Elizabeth and her family’s life has changed significantly. The family now has to endure increased medical bills due to treatments that insurance does not cover, on top of travelling to the Mayo Clinic and the expense of lodging while there for up to 4 weeks all in the hope to find coping solutions. In addition to time off work that will go unpaid. They are a very proud and humble family who are the first to respond to others in need. If you are able to give, even a small amount towards helping towards the financial burden this Mayo Journey will create- they will be very appreciative.
You may ask what is POTS. I found the best definition on https://myheart.net/pots-syndrome/. To quote “POTS is a form of dysautonomia that affects the flow of blood through the body, thereby causing dizziness when standing. Technically, someone has POTS if their heart rate increases by 30 beats per minute or their heart rate is greater than 120 beats per minute within 10 minutes of standing up.
The autonomic nervous system regulates involuntary actions that allow the body to function. When we stand, for example, the body needs to accommodate an entire set of processes to allow this. Upon standing, a significant amount of blood automatically falls to the lower body. Autonomic reflexes ensure that blood gets appropriately distributed to the upper body by changes such as muscle tone, vessel tone, heart rate, and pumping responses in the heart.
There is a range of diseases that affect the autonomic nervous system known as dysautonomia. POTS is one of them. In POTS, there is increase in heart rate and light-headedness on standing, as well as exercise intolerance, fatigue, and a multitude of other symptoms. POTS may be so severe that even normal everyday activities usually taken for granted such as bathing or walking may be severely limited.
Although anyone can be affected by postural tachycardia syndrome, it is by far most prevalent among woman in their teens, twenties, and thirties. There is a wide spectrum of POTS-like disorders that falls under the umbrella of dysautonomia, several of which do not have the increase in heart rate.”