“My name is Jasmin and I’m 26 years old. I was born with a rare disease, Fibrodysplasia Ossificans Progressiva (FOP), which causes extra bone to gradually form over my muscles, joints, and soft tissue. I have limited mobility, chronic pain, kyphoscoliosis, and a very restricted lung capacity due to the layer of FOP bone which surrounds my rib cage. A respiratory illness like the current novel coronavirus (Covid-19) puts my life in danger.
This virus could easily send me and other vulnerable people to the emergency room (which would be even more stressful for us because many hospitals are quickly reaching capacity). Our bodies aren’t able to fight off infections as easily as yours. The symptoms I’ve experienced just from being sick with the flu, walking pneumonia, bronchitis, and pleurisy (lung inflammation) have been serious enough for a hospital visit since they all affect the respiratory system. If I became infected with the new Coronavirus, it would be even harder for me to breathe than it already is; my airway is significantly constricted due to FOP. It would also be incredibly difficult to fully recover from the effects of the illness.
I want to emphasize the importance of social distancing during the pandemic, especially this month. Social distancing requires you to limit your social interactions as much as possible to help decrease the spread of Covid-19 infections to the vulnerable populations. You may not be worried about your own ability to fight off the virus, but please think about everyone in your life and those around you who are more medically complex (or have people in their households who are). Even if you feel healthy and don’t have symptoms right away (or ever), you could still unknowingly pass on the virus to someone whose body isn’t as strong. If you’re taking advantage of the cheap flights available, keeping the plans you made with friends or family, or shopping for non-essential supplies, you‘re greatly endangering the lives of those who are at higher risk of severe illness. These individuals include the immunocompromised (having a weaker immune system), older adults (ages 65+), the chronically ill, and anyone else with breathing difficulties like me. Limiting your time in public and taking extra precautions to not spread germs to vulnerable people are incredible acts of solidarity. It shows you genuinely care about more than just your personal health.
As you’re social distancing, think about people you know who have had to stay home for extended periods of time due to illness, disability, or injury. Think of those who were already isolated away from society, and those who will continue staying inside long after the pandemic ends. How have you viewed their lifestyles? Did you think they were ‘lucky’ they got to stay in bed while you had to go to school or work? Are you already starting to get bored at home even though it hasn’t been that long yet?
I’d encourage you to reach out to us. We have mastered the art of staying occupied and have learned how to embrace our circumstances — but we also know how scary and surreal life can feel when there’s a drastic, unexpected change. I’m especially grateful for the support I’ve received in the form of texts, Facebook messages, physical cards, and thoughtful FaceTime invitations. There are a lot of unknowns in our world right now which is why we need to lean on each other more than ever.
I’m temporarily living at a skilled nursing facility due to the progression of my disease. We’ve been on a strict lockdown since March 10th, and are unable to leave our rooms. We’re also not allowed to have any visitors (including family and friends, but with the exception of hospice care) until the Coronavirus is better controlled. This has been very difficult and disheartening, as we were already quite isolated even before the lockdown began. However, I’m thankful our nursing facility staff are taking all of the necessary precautions that have been recommend by the CDC. In addition to disinfecting our rooms and their equipment more thoroughly, they’re also being screened for any flu-like symptoms and taking our temperatures several times a day. The Covid-19 pandemic needs to be taken much more seriously by everyone so we can prevent potentially major outbreaks and unnecessary deaths.”
Read more inspiring stories from chronic illness survivors during this time here:
‘I get to the door and there is my eldest son, arms crossed, blocking entry. ‘Mask, Mom!’ I am high risk, and one blessed mama.’: High-risk woman battling myasthenia gravis urges ‘this is not just a little sickness bug’
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