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The Hardest Parts of Rare Disease Life During COVID-19

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Editor's Note

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For all of us, the COVID-19 pandemic is unlike anything we’ve witnessed before. COVID-19 is a new-to-humans coronavirus that can cause severe respiratory infection as well as a variety of other symptoms.

Many of those in the rare disease community are already familiar with taking health precautions, like self-isolating or stocking up on medications. Unfortunately, difficulties accessing health services is not a novel experience when you’re rare. While certain parts of dealing with COVID-19 are not necessarily a shock to the community, what’s concerning is that currently, these issues seem to be even more pronounced.

In an effort to learn more and validate these experiences, The Mighty and Global Genes, a national rare disease non-profit dedicated to raising awareness and providing resources to patients and families with rare disease, decided to dig deeper and ask our rare disease communities about the hardest challenges they’re facing right now.

People openly shared their concerns about being unable to access appointments and the fear of going to the ER when experiencing symptoms related to their rare disease. For some, knowing their rare condition(s) automatically puts them at an increased risk for COVID-19 adds anxiety, and a heavy element of reality, when most are already in survival mode.

Here’s more from our communities:

  1. “For me, having an untreatable rare disease coupled with COVID-19 concerns feels like a recipe for a health disaster. I’m taking no chances.” – Rhonda R.
  2. “I’m terrified that I’ll get sick and won’t be able to care for my husband. It keeps me up at night.” – Kathleen K.G.
  3. “My daughter has a rare immune condition. Any temperatures above 100.5 typically send us to the ER for a septicemia evaluation. But the ER is the last place we want to go for risk of exposure to COVID-19. We’re having to kick out specialist appointments and delay routine labs. We’re hoping we aren’t creating another problem in our attempt to shelter from the current pandemic. What was once top priority for her health is now being delayed out of concern for her health. It’s a weird world to navigate.” – Lisa L.V.
  4. “The hardest part of living with a rare disease during the pandemic is that there are times I have to go to the Emergency Department (ED). I have hereditary angioedema, and my life-saving medication has to be given by a medical professional. Since it’s my throat swelling, I have to go to the ED. It’s so hard because we need to stay away from hospitals to stay healthy, but if we want to live we have to go.” – Brittney S.
  5. “I’m terrified I’ll need to take my daughter to an emergency room for something emergent but very treatable, and that she will be exposed to COVID-19 while there. She has a compromised immune system, a tiny rib cage, and low muscle tone, so though children aren’t typically negatively affected by COVID-19, I still know she’s very at-risk.” – Lea A.M.
  6. “My mom and sister are taking care of all my shopping, and even taking the time to individually clean every item before bringing it in. They know my weakened immune system can’t fight much more. Now it’s getting difficult to find the foods and medical supplies necessary for my day-to-day care.” – Deborah R.
  7. “I have major respiratory issues and breathe on about a 72 percent lung capacity on a good day, so the hardest part of this for me has been experiencing a bit of paranoia caused by listening to everything about the symptoms and accounts from medical professionals as well as people who’ve contracted COVID-19, as well as the uncertainty of what’s going to happen when this subsides.” – Scott M.
  8. “On top of all the anxiety and stress related to the virus itself, all health care for my son has been put on pause. He is in recovery from surgery. We can’t see his physiologist. He has outgrown his AFOs and we can’t have our casting appointment. He has gone through a growth spurt and needs adjustments on various equipment, and we are waiting on a new stander and power chair. I’m concerned about how long we will be without the care and equipment that is vital to his daily health and wellness. I miss being able to access the support network we are used to having.” – Amy F.
  9. “The hardest part is knowing my son with cystic fibrosis (CF), is in the ‘compromised’ health category. It is terrifying to think of him being exposed to COVID-19 and what that might mean for him.” – Pamela T.M.
  10. “The truth is, rare disease kids live quarantined 24/7, 365 days of the year, and this is nothing new for my 4-year-old son Jordan who has a neurodegenerative disease. We washed our hands before it was cool to do so; we also sanitized and used Purell. We didn’t go to the mall or restaurants or birthday parties. And we’ll continue to quarantine long after COVID-19 is gone. What the world doesn’t know is that sitting on the couch for a few weeks might save them but it won’t save my 4-year-old son dying of a rare disease for which there is no treatment or cure. We’ll keep fighting while the world goes back to ‘normal.’” – David O.
  11. “I’m worried that my child who has occupational therapy, speech and ABA therapy will regress. I can and do work with him at home, but we have our limitations at home compared to being in a clinic. I’m worried when things get back to ‘normal’ his behaviors will spike and we’ll have to start from the beginning again with his therapies.” – Jenn J.
  12. “I live on a limited income as it is due to disability. All the money I have was used to get supplies for at least two months since I can’t go outside for groceries. I am unable to get my physical therapy which helps me move because my insurance doesn’t cover that form of telehealth service. By the time I leave quarantine, all the hard work I have done to get back on my feet will be reversed. I have been flaring to the point where normally for the pain I am in, I would go to the ER, but because of COVID-19 I most likely won’t be seen. Mentally I feel drained and exhausted.” – Michelle A.
  13. “I worry that I will somehow put my son’s health in jeopardy because I am careless –that I may bring the virus into the house when I go get essentials.” – Mary H.H.
  14. “People who don’t understand the extremes we need to adhere to, and I worry about the impact it will have on family and friend relationships once restrictions ease. I’m trying to figure out if, and how, I will be able to send my child to school after summer break if COVID-19 proves to be seasonally cyclical, as they are predicting it will be.” – Andria P.M.
  15. “I’m trying my best to stay safe. It’s hard for my family; one person works in healthcare. They are scared to bring it home. I can’t work at my job until it gets better. My income is non-existing. People used to stare and mock me for wearing a germ mask before the pandemic. Now they understand why we wear them.” – Stephanie G.
  16. “The hardest part is not being able to access in-person medical care, physical therapy and the swimming pool. I’m developing new health issues during this and can’t get them diagnosed or treated properly. I’m feeling more isolated than ever before. My only consistent form of human contact and social connections were my doctor visits.” – Tris A.G.
  17. “I have twins with Prader-Willi syndrome. I’m trying to meet their needs, like special diets, working with their emotions and homeschooling at the same time. I feel like I’m working 10 times harder and accomplishing 100 times less.” – Bethany S.
  18. It’s having to watch other people put your health at risk by not following the protective measures put in place by the government. It’s all well and good that you are healthy and don’t think that this virus will do much to you if you do get it. But if I get it, I’m in serious trouble. It’s also hard being ineligible for emergency funding from the government because of your health situation.” – Annie G.
  19. “I’m worrying about the medication my kids need, which is already difficult to come by. As things get weirder, I worry that we will no longer be able to get the medication my kids need to stay alive.” – Tammi W.
  20. “I’m concerned about the lack of home nursing. I only have two out of 10 left, and they’re really doing their best!” – Sabrina S.K.
  21. It’s having to calm my children every time the news says they won’t survive if the catch this.” – Crystal S.H.
  22. “Trying to stay safe while still going to work at a job that is deemed essential, and then on top of that being the only one who can go get the essentials because you’re also a single parent. People forget that not all of us whom are high-risk can isolate during this, so we have to rely on others and hope that they are social distancing, staying home when they are sick etc.” – Sarah M.
  23. “I work at a grocery store. I already had my hours reduced to less than 20 a week due to my health. Now I’m only working one or two days; it’s not enough to get extra (hazard) pay. So I’m actually making less money to put myself at a higher risk. There are still so many customers that aren’t getting it and I don’t feel safe. I am so afraid of getting the virus; I am always twice as sick for twice as long as anyone else. My anxiety is through the roof and I worry if I’m doing the right thing, whether I go to work or stay home.” – Nancy H.R.

Do you live with or care for someone who has a rare disease? In your experience, what’s the hardest part of dealing with COVID-19? Let us know in the comments below.

Originally published: April 17, 2020
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