All tagged MCAS

COVID complications

COVID complications

Kelly Cervantes

Wednesday night I started to write a post about how terrifying COVID-19 is to the medically complex and fragile communities. I mean, our normal was already face masks and obsessive hand-washing for years - where do you go from there? But then I realized it would be so much better to hear from a medically fragile individual who is facing COVID-19 fears personally. I am honored to present a guest writer this week, my dear friend, Courtney, who so clearly explains what is at stake for the medically complex community and why you should care.

Everyday we're hustlin'

Everyday we're hustlin'

Kelly Cervantes

Tomorrow is Rare Disease Day and among the many (many) awareness days throughout the year, this has always been one of my favorites. This week I was reminded why: the rare disease community includes some of the most dedicated, supportive and hardest working hustlers you will EVER meet. From patients to caregivers to clinicians- alone we are rare but together we are strong AF.

Within our means

Within our means

Kelly Cervantes

Just call her Dr. Bug. Thanks to her mast cells rejecting her IVIG infusions Miss A will now be sporting this adorable medical accessory whenever she leaves the safety of our home. Adelaide’s health has been declining in the last month and we are fumbling along as we figure out her new limits. Years ago, life gave me a crash course on living within my financial means, but now I’m learning how to live within our wellness means. Dr. Bug is an excellent teacher, though I must say, not very patient…

Code brown

Code brown

Kelly Cervantes

Are you eating? Thinking of eating? Just eaten? Maybe wait to read this post till later. I’m typically motivated to write about whatever is dominating our life at the time and honestly, right now, its poop. This is the life folks, just soak in that glamor! Up until last week, Adelaide was frequently constipated. This was likely due to a combination of having low tone, her mast cell activation syndrome and, certainly not helped by the fact that nearly every drug she is on lists constipation as a side effect. I’m going to pause here and remind everyone to be careful what they wish for…

Mast cell 101

Mast cell 101

Kelly Cervantes

It should come as no shock that Adelaide's body likes to keep us on our toes. Just over a year ago we added a new rare disease to Adelaide's growing list of diagnosis: Mast Cell Activation Syndrome. With Rare Disease Day shining a light on so many conditions yesterday, today seemed like the perfect opportunity to share a little bit about Adelaide's other not so fun disease. Who's ready for mast cell 101?! Don't worry I explain it all in typical Kelly fashion: a little bit of science with a lot bit of sass.