Today, I am going to share something very personal with you.

I have been blessed to meet so many wonderful quilters. And I don’t just mean their quilting projects. I mean as people.

They have shared stories of their personal fight with any number of terrible medical issues: cancer, epilepsy, diabetes, scleroderma, joint disorders, etc. Many have not one but multiple diagnoses, especially when the disease is autoimmune related. Don’t call them victims, they are survivors. They use quilting as part of their mental therapy.

Then, there are the ones who are the care givers for loved ones who are fighting illness. They give so much of themselves to help others keep their dignity, provide comfort, and push for solutions.

Let’s not forget those who are doing the research and medical care to keep our loved ones as whole as they can. Or the people who donate their time, talent and treasure to find cures, comfort, and support for those battling illnesses.

Let me tell you about Zebras

You know the saying, when you hear hoof beats, think horses not zebras. Well, that doesn’t work for everyone. In fact, sometimes, you need to think Okapis (rare animal related to the giraffe not the zebra). But I digress.

Today, is Leap Day and it is also Rare Disease Day. Today is dedicated to those survivors, who not only have the disease to fight. But they have the additional burden of medicine not knowing enough about their disease to help them as much as we would want. If you want to know more about Rare Disease you can visit:

This ribbon has not only the colors but the stripes for Rare Disease Day. And everyone is encouraged to show their stripes today.

Showing My Stripes

Now, we get to the personal bit. I have one of those Rare Diseases. At first, the doctors said “it is just stress.” If I ever hear that again I will scream.

The trouble with some rare diseases, especially autoimmune related ones, is that they come in a variety pack. You don’t get just one. They have all sorts of symptoms that keep the doctors and you guessing.

Over the course of almost forty years, the doctors would diagnose me with one thing and then another. The first condition would seem to be under control and then something else would go out of whack. I felt like we were playing whack a mole with my medical chart. Or you could equate my body with the old house project – you fix one thing and then something else breaks.

No matter how bad it got, I stayed positive. I refused to let it define me – one of the reasons, I haven’t shared until today. I kept working through all of it. If it weren’t for my loving family, devoted friends, and quilting, I am sure I would have lost my sanity by now.

I have been fortunate to have excellent doctors at Johns Hopkins who have finally gotten to the root of the problem! And for the first time in years, we are able to treat some of the causes and not just the symptoms. The damage can’t be reversed, but we can stop the progression. I have autoimmune atrophic gastritis. Without gory details, I have severe malabsorption issues and all that goes with it. The good news is that the doctors are finding ways to help me overcome this. I am so hopeful.

I tell you this, not for sympathy – I am a fighter and a survivor. My disease does not define me. If anything, it makes me work even harder. I don’t let any of this stop me from creating wonderful designs and enjoying the world of quilting.

I share this because quilting is therapy for so many, as it is for me. We have no idea the personal battles others are fighting. Have some grace, give some space. Quilting may be helping people cope with medical issues of their own or ones they love.

Happy Quilting