What does it mean when someone supports you? Not because they pity you and feel like it’s the right thing to do, but just because they want to and can help. Many of us with rare diseases are constantly being told that we’re not in this alone, but we are. With our great team of doctors and family and friends, we’re dealing with our disease alone.

A blind person can have another person do everything for them, be their eyes and hands, but a blind person is still blind, in the dark alone. Sounds very depressing right? Yeah, it can be sometimes. So let’s circle back to support, and discuss why it can have a huge impact. 

When I was diagnosed with Pompe disease, I never heard of it before and as I got older I realized that I didn’t know anyone with it as well. It wasn’t a big issue for me until I met someone online with it as well. I was surprised and extremely excited because I met a girl who was close to my age and knew what it was like to have been through what I’ve been through. 


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The issue was the lack of knowledge I’ve been missing out on for years. After meeting this girl online then later a few other people with Pompe disease, I found myself learning more from them than from doctors. Support coming from experience is probably the most important support needed.

When you have a family that takes good care of you and a really good doctor, you will think that’s all you need and you will consider yourself lucky just for having that. But when you have people in your life that are living with the same rare disease that you’re living with, it makes things a little more tolerable.

Fortunately, physicians favor the idea of support groups, as they would call them. The company of sick people hanging around other sick people is good because we can deal with the pain together, at least that’s how they see it.

However coming from a patient perspective, it has nothing to do with dealing with the pain together, it’s the complete opposite. We get stronger together. We learn together and heal together. 

Read more about therapies for Pompe disease

I like to think that we’re currently living in the future and one of the most fascinating things about the future is the internet and how social media is a huge part of society today. The support we get online is just as important as the support we get in person. 

When I met someone with Pompe disease for the first time we instantly became friends. I learned that our lifestyles were very different even though we were both diagnosed with the same condition at the same age. After learning so much about her I realized how uneducated I was about everything. 

From my diet to medical equipment to resources I learned I was far behind. She’s the reason I changed my diet. I wasn’t aware that there were certain foods that I shouldn’t be eating because they will do more harm to my body. She was the reason I began studying my body and how it reacted to certain things because even though people have the same condition it can affect them differently.

I feel like with every disease, rare or common, there is a certain uniqueness about how our bodies are affected. For example, the way each of our bodies heal or even how differently we all react to the medication. We don’t really know this until we actually hear it from another patient. It’s good that physicians suggest support groups to their rare disease patients, and I know many patients don’t like the idea of hanging around other patients just because they want to keep a bit of normality in their life or maybe the idea of a support group seems depressing. But you’ll always meet that one person that will make you glad you choose to be a part of something. 

As strong as we seem, as strong as we are, we need the support of others like ourselves.