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Repurposed: How I Found a Treatment for My Daughters

Sometimes, something crosses our path that appears to mean nothing to us but we check it out anyway because our gut tells us to. That is exactly what happened when I discovered that an OTC medication could alleviate some of my children’s symptoms.

A good deal of my time is spent reading anything that has a connection to rare diseases, in particular Ehlers-Danlos Syndrome. Occasionally, an article will cross my path that stands out for reasons that aren’t clear to me. Both good fortune and some motherly instincts led me to an article that then led me to a treatment for my children.

I started both my girls on half a dose of an OTC medication. My expectations were pretty low on how I thought this compound would perform. The impact was immediate. The first day my daughter, Olivia, had the pain between her should blades disappear - a pain no doctor could explain, but I expect was a result of inflammation. Gone. And it has not come back for the year she has been on the medication.

Olivia also had amenorrhea, an absence of menstruation, for years. She experienced a normal menstrual cycle the first month she started the medication and then the second month and the third. At first, I didn’t make the connection, I thought there must be some other reason. Now, amenorrhea is one less thing I have to worry about.

This medication was doing some pretty cool stuff. I had no idea it could possibly be a life saver, but not in the way medication is usually a life saver. My daughter, Hana, suffers from Postural Orthostatic Tachycardia Syndrome(POTS). Around her menstrual cycle, Hana would experience severe POTS flares - debilitating nausea, fatigue, headaches and dizziness. As her mom, it was so hard to watch. I was completely helpless. I tried to make her as comfortable as possible, but it was more of a gesture than any kind of actual physical relief. Every month I waited with dread for these debilitating symptoms to begin.

One day, during a flare, Hana felt that the life she was living was too painful, that these flares would come relentlessly every single month with no relief. We lost three EDSers to suicide in one month, so this is something that was on my radar but, when it became Hana’s choice I was not prepared. We worked through that heartbreaking time and shortly after that I read the article that led me to a treatment. Now, Hana no longer has debilitating flares. She doesn’t spend a week in bed. She doesn’t even spend a day in bed. She doesn’t feel great in the few days before her cycle, but I just tell her it’s ‘common’ to feel that way. 

This treatment is doing remarkable things, but it does not do enough. I want a cure.

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Is there a full article on what med was used? My 20 year old has Ed's, Pots and Celiac disease

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