By now, most everyone has felt the impact of the coronavirus (COVID-19) outbreak in their lives. From the east coast to the west coast, virtually every state in the US has cases of the virus making this a challenging time for everyone. But for those impacted by rare disease, the challenge is more difficult given suppressed immune systems, strained caregivers and the higher economic burden of rare diseases.
Like viruses of the past, this too shall pass though we need to make sure that we are prepared for this marathon, not sprint, towards normalcy. The CDC has released helpful information on prevention that I encourage people to familiarize themselves with in order to help fight back by staying safe. While there is a lot of information available, one of the best precautions is to wash your hands.
“Wash your hands”! I know we can all relate to growing up hearing our mom telling us this countless times. And among many of the other things our moms have told us, you have realized she was right.
Think of the last time you were sick and the fatigue that comes with it-that is what it can feel like to live with a rare disease everyday and especially during a peak in flu or viruses. Your immune system is always struggling, always battling against pathogens.
As a mom to two boys with a rare disease it takes a lot of discipline to try and make sure they eat what they are supposed to and take their medications and supplements like they are supposed to.
Attending a function, going to the hospital, and attending school- otherwise simple tasks are risky. You never really know how they will feel or what they can or can’t do until the actual day of the event. Some days are better than others. A simple cold or virus can quickly take a turn for the worse with someone impacted by a rare disease.
Society can be completely unaware and unconcerned with others’ health conditions; they go to work or send their sick kids to school and don’t realize how traumatic it can be for those with compromised immune systems. I have learned to be proactive to keep them as safe as I can and others should do the same. Panic is not the answer, just precaution.
I wish I could “bubble wrap” my children to protect them but then they miss out on living. Despite living with a rare disease, we have to try to make this adventure (life) as fun as possible.
So next time you “Wash your hands”; find a good 20 second song you can dance to!