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While Pompe disease doesn’t affect men and women any differently, it’s still very necessary to understand what it’s like for a woman with Pompe. There’s so much that the female body goes through, and for many with late-onset Pompe, like myself, we’re diagnosed at the very beginning of puberty.

My adolescent years were the most challenging years of my life. A major part of my constant hospitalizations came from my body growing and changing while having a glycogen storage disease. When I first started menstrual cycles as a teenager, I was so weak that I couldn’t get out of bed. When I was 18, I took birth control pills because I was told by doctors that my body couldn’t handle a pregnancy, so I had to take precautions, and the birth control pills ended up making me sick. Pompe makes everything more challenging with menstrual cycles, pregnancy, birthing, raising children, and all the changes a woman’s body goes through with age. 

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To help manage Pompe, your care team doesn’t necessarily consist of an OBGYN, so when you have certain things going on with your body as a woman, and you have to be tested and treated, Pompe has to be considered. For example, does my OBGYN know if my taking birth control will be safe while I’m on enzyme replacement therapy? Or if my getting a cesarean section will be safe and effective with my Pompe.

It starts with being a girl with Pompe struggling to breathe from the fumes and aroma while painting your nails or dyeing your hair. And even though Pompe is described as a muscle weakness disease, there are so many health issues that come along with it that every individual experiences differently. Heart problems, respiratory failure, poor blood circulation, fragile bones, struggle with weight, back pain, poor immune system, poor levels of proteins, and a lot of other effects just randomly occur. 

I have had conversations with women of different ages and backgrounds that have Pompe. They have shared their personal experiences of having to take a different route in dealing with real-life issues because of having Pompe. And I’m referring to women who are not like myself; they’re not in wheelchairs or ventilators or need a caregiver as I do. These are able-bodied women who are still very active.

As a reminder, Pompe patients are all diagnosed at different times in our lives. And so many of us are dealing with other health issues along with Pompe. But when I hear a young girl with Pompe being hospitalized and having to start using a wheelchair because she’s pregnant or an older woman struggling to pick up her grandkids or cook her family a meal, it makes me realize we deal with a lot. And I’m not saying women with Pompe have it harder than men with Pompe because I have no idea what it’s like being a man; I can only speak from what I know. 

It’s pretty amazing being a woman, and having Pompe doesn’t make it any less amazing. The only reason I think our challenges should be recognized is because of the amount of love and support that we actually need to conquer everyday challenges. We need understanding from our doctors and support from our friends and family. We have to take charge of our health and place high standards on the medical care that we deserve. And we have to listen to our bodies and understand that not everything our bodies go through is Pompe-related, because the female body goes through so many changes, and that’s OK because anything unique is worth the challenges.