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 lifesaver, but not in the way medication is usually a lifesaver. 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.

Patricia Weltin
Patricia Weltinhttps://www.beyondthediagnosis.org/
Patricia is the Founder and Executive Director of Beyond the Diagnosis, a registered nonprofit providing art and science to inspire research and innovation of treatments for people living with orphan and neglected diseases. Beyond the Diagnosis began working on a project to increase research and raise awareness of rare diseases within the medical community through art. Professional artists paint portraits of children living with a rare disease; the portraits then become part of a traveling exhibit for medical schools, research institutes and hospitals. Our Beyond the Diagnosis art exhibit was first unveiled at Brown University's Alpert Medical School for the entire month of February 2015 in honor of World Rare Disease Day. Demand for this unique exhibition has increased 500% in the past three years. The exhibit continues to grow and inspire both the medical community and researchers to increase e orts in rare disease research and treatments. This exhibit has also touched the hearts and minds of the general public. Since the debut, Beyond the Diagnosis has visited the NIH, Broad Institute, Hofstra Medical, Harvard Medical, the FDA and many more. The exhibit currently consists of 100 portraits representing children living with rare and undiagnosed diseases. With your patronage, Beyond the Diagnosis will continue to grow, increase rare disease education in medical schools, increase research at some of the world’s leading institutions, create new conversations about rare diseases and bring hope and joy to the rare disease community. Patricia, the mother of two children with Ehlers-Danlos Syndrome, began working in this space by creating a new business model of working by state. Her award winning work in state-level advocacy grew to national advocacy efforts. Today, Patricia proudly works to successfully use art as a powerful tool to create awareness and increase innovation into orphan and neglected diseases.
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