Megan's Experience with POTS, EDS, and MCAS (Part 2)
If you have yet to read part 1, you can access it here!
Sisters With The Same Condition
Megan’s younger sister, Jillian, started experiencing symptoms at age 7. Doctors diagnosed her with Fifth Disease, a mild illness that causes a face rash, sore throat, fever, headache, and other symptoms. Jillian was given this diagnosis four separate times. That being said, you can only get Fifth disease once because the body builds immunity to it that lasts for life.
By the time Jillian was on her own diagnostic journey, the family knew how to manage symptoms, advocate for the girls, and find diagnoses that completely explained all symptoms. Jillian was first diagnosed with MCAS, however, her case was much more severe than her sister’s. When she was first given medication to cure her hives, she reacted in such a way that she developed vasculitis so severe, she almost died. They discovered Jillian had a severe sensitivity to most medication and now manages her MCAS and POTS without medication. While this is difficult, she realizes she has no other option.
Managing Two Sick Kids, While Managing Your Own Symptoms
Christine, Megan and Jillian’s mom, also has Ehlers-Danlos Syndrome. While she manages her symptoms, she has learned a lot from being a parent to two chronically ill kids. She has learned not to panic. If one of the girls passes out, she knows they will be okay, and that overreacting won’t help anyone.
She has also learned that rushing to the ER or Urgent Care may not always be the best course of action. Some of the medications used to treat chronic illness suppress the immune system, so going to a place riddled with germs may not be helpful in the long run. Low grade fevers can be managed at home. For individuals with chronic illness, the fevers may be a symptom of the condition - and therefore are not contagious unless caused by another acute illness.
Above all, she has learned to advocate for what she and her girls need. Individuals with chronic illness can live with their symptoms every single day, and this builds a lot of knowledge and understanding of self. Don’t be afraid to use it!
What does a POTS / EDS / MCAS Flare look like?
This can look different for everyone. For Megan, she can become incredibly dizzy, and knows to increase her salt intake when this happens. They happen randomly, but she has learned to sense when they may be happening. They can last anywhere from a few days to a few months.
Her years of managing her POTS symptoms have allowed her to get a deep understanding of her symptoms, and she no longer uses pharmaceutical medications for POTS. She has found that these medications cause side effects that cause more symptoms, essentially creating a domino effect of symptoms. Some of the side effects she has experienced over the years include alopecia and dental issues, so a choice she made with her family and care team is to weigh the benefits of these medications with the side effects.
POTS is becoming more understood, but there is still a lot to learn, so managing symptoms and flares is a process of trial and error. The condition itself does not cause long term damage to the individual, but the side effects of some treatments may have permanent implications.
The Necessity of Herd Immunity While On Immunosuppressants
What is Herd Immunity? Herd immunity happens when a significant portion of a population becomes immune to an infectious disease, and the risk of spread from person to person decreases. This protects those who are not immune by minimizing the ongoing spread of disease. Herd immunity happens when individuals get infected, recover, and gain immunity, or are vaccinated. (1) Herd immunity is important to individuals who cannot get vaccinated against these diseases, such as newborns or individuals who are immunocompromised.
When Megan was 12 years old, she got her Gardasil shot - a shot to protect against HPV. She had an adverse reaction to the vaccine and was couch and wheelchair bound for the following year. Herd immunity is incredibly important for Megan and for other individuals who are unable to get vaccinated for various medical reasons.
Living with an Invisible Illness
POTS, EDS, and MCAS symptoms can all be invisible to the untrained eye. To many, Megan, her sister, and her mom, all look healthy. Even though they may look this way, they can be battling any number of symptoms. There is so much stigma when symptoms are invisible because others may expect you to be able to do everything a healthy person might do. While she was growing up, Megan’s parents tried to pre-plan as much as they could so she could do the things she wanted to do. This might mean planning to do nothing leading up to a big event so Megan would have the energy to enjoy herself at the event. They knew this would exhaust her, but planning ahead allowed her to do what she wanted, and be able to manage her symptoms afterwards.
Now that Megan is out of school, she works at a local business. She is able to manage her symptoms, and knows when she needs to take a break, sit down, and drink water. Her dream job is to pursue crafting full time. She enjoys crocheting, even though it can be difficult with her EDS symptoms, and also uses her Cricut machine to create art.
A Folia Superstar
Megan has been tracking her health observations on Folia for just about three years, and with practice, comes speed and skill. She tracks nearly every day, and can track all observations in under a minute!