Bad Hair Day?

“You would never know you were sick because you look so fabu! Your hair is gorgeous! Is that inappropriate?”Matt Martinez, Independent Filmmaker & Magic Club Co-Founder
No Matt, it is never inappropriate to tell me my hair looks good – especially after I’ve been fighting with it since the start of my infusions.

After I started receiving my enzyme replacement therapy (ERT) infusions I noticed that I was having one mild side effect – my hair and scalp were very dry. My hair was very dry and untamable – it was like straw. I tried all sorts of things to remedy this. I used tea tree oil and hydrocortisone cream on my scalp which only temporality helped and the dryness would come back. I even tried dandruff and dry scalp shampoos which didn’t help – and those things are not cheap and don’t smell all pretty and girly!

Finally, on the advise of my hairdresser I started using a leave-in condition after every shower and a deep conditioning treatment, or “hair mask” once a week. This seems to have done the trick. I still get a dry scalp, but it is not as bad and not constant. And now my hair is shiny and manageable again.

I have heard from a few other Pompe patients who are on ERT and having similar issues, so I thought I’d share with you what I use.

My new hair care weapons! It's a 10, miracle leave-in product and miracle hair mask.

After shampooing and conditioning in the shower I use a leave-in conditioner. I spray it on my towel dried hair and comb it through. Once a week after shampooing I apply a deep conditioning treatment which I leave on for 5-15 minutes and then rinse out. Both these products are “It’s a 10” and can usually be found at your salon or in stores like Ulta. I can now even blow dry my hair, use a styling iron, and/or apply styling product without over drying my hair.

No more bad hair days for me (at least not because of an ERT side effect). And honestly, if this is the worst side effect I’m going to experience because of it – well, then no big deal. It could be worse.



  1. can anyone use this product?
    so impressed by how your blog is growing my luv! 🙂 you are making a difference!
    smiles and hugs,

    1. Thanks! And yes, anyone who wants softer more manageable hair can use it. It doesn’t leave your hair greesy or anything like that, just really soft. And I bet it would work wonders on those who don’t have my problem! Let’s make the world beautiful, one head at a time! 😉

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