How rare disease patients and families are adapting to new COVID-19 restrictions

UpdatedApril 23, 2020

People affected by chronic and rare conditions already know what it’s like to make big adjustments for health reasons, so they have a unique perspective during the challenges of COVID-19.

By Catherine Cooke Patient and doctor meeting remotely

What do people affected by rare disease do now that they are being told to stay home unless a medical visit is completely essential? A global pandemic may have put many things about our lives on pause, but it does not pause the daily challenges of managing an ongoing condition.

This is the first in our series exploring how members of the AllStripes community are adapting to the COVID-19 changes, and sharing their tips for how to get through this period of quarantine.

Rhonda: ‘[People] are now a little more empathetic to what I face every day.’

(Diagnosed with inclusion-body myositis, or IBM)

Due to my physical limitations, it’s a challenge for me to get moving and out of the house, though I loved going to physical therapy (PT) and walking. But I did stop PT, and then subsequently, when parks closed, I had to give up my safe trails that I used for walking. Even though I try to do some of my PT exercises at home to keep moving, it’s not quite the same.

Since I am also in a clinical trial at the moment, my trial has shifted to telehealth check-ins as much as possible, and the trial is making some adjustments regarding pill supplies. I’m supposed to go for an on-site visit next month, but since the clinic may or may not be open, arrangements may be made for me to receive an in-home blood test, so we can maintain trial protocol... The long-awaited trial continues, even with COVID-19 casting a shadow. Good news!

Many feel like their entire life has been stripped from them, and in many ways, that is true. If anything, they are now a little more empathetic to what I face every day.

Since coping with my disease has already forced me to become very adaptable and flexible, I already know how to make things work for me or keep myself occupied if I can’t do what I would normally do. I try to find something that makes me feel good and happy each day. Cooking, getting lost in a [streaming] series, music and reading can be really fun!

Turn off the news, find a happy spot to visit, and go there. COVID-19 or not, happy is a great place to be, if you can find it.

Lisa: ‘Do not delay going to the ER if any serious symptoms arise. The hospitals are well equipped to screen and protect your child from COVID-19.’

(Mother to Jessica, diagnosed with NF2)

All our scheduled physician consultations have moved to virtual meetings, which is fine for discussion but obviously means the doctor cannot complete any physical examination.

I recommend writing down all the questions and concerns that you want to address with your doctor ahead of any virtual meeting so you do not forget to address them in these new circumstances.

For my pediatrician consultation, I was concerned that we would not have as much time virtually, so I emailed my pediatrician a health update along with all my key concerns/questions ahead of the call, and we worked through my email in our call to ensure nothing was overlooked. I am expecting that long-standing appointments with some physicians, surgeons and radiology will be severely delayed or postponed, and this might have an impact on making critical treatment decisions.

My advice is try not to panic, and do not delay going to the ER if any serious symptoms arise. The hospitals are well equipped to screen and protect your child from COVID-19, and delay in treatment for a serious illness may be very harmful. My daughter went to the hospital for a diagnostic EEG test and it all felt very professional with several safety measurements in place to minimize risk for everyone.

Most doctors are also available via phone and conference platforms to support you, so reach out to them if you need help or advice.

Greta: ‘Plant some flowers or a garden. Digging in the dirt relieves stress and takes away the blues.’

(Diagnosed with idiopathic thrombocytopenic purpura, ITP)

Telehealth has been a blessing. We can contact our doctor whenever we need her. It’s really more convenient than going to the office, and we’ll probably continue communicating online from now on.

The only problem is doing blood work, but we are trying to accomplish that through home health providers.

Step outside whenever you can. Walking barefoot in the grass helps reduce inflammation that contributes to anxiety, stress and pain.

If you can, plant some flowers or a garden. Digging in the dirt relieves stress and takes away the blues. Immersing our fingers in the cool, moist soil and inhaling the clean, earthy scent seems to leach out the cares and worries that mentally weigh us down.

The exercise, sunshine, and fresh air revitalize you and help you cope with being isolated at home.

We will continue to share experiences from our community throughout the COVID-19 pandemic. If you’d like to share your experience please email us at community@allstripes.com

Originally posted at April 23, 2020

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