"Suffering the Slings and Arrows of Outrageous Fortune"

Join Together for Better Care

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Every year, on the last day of February, rare diseases are celebrated by the global community. On that day, a light shines in the darkness of the isolation that comes of living with a rare medical condition – a condition that you may have to spell for your doctor or teach him how to pronounce or respectfully teach him about because he never learned about it in med school. When a person faces a diagnosis of this nature, it is frightening, overwhelming and lonely. There is so much to learn in such a short period of time and the stakes are so incredibly high. At first, you feel utterly alone – like you are the only one living with it and that you are forever set apart from the rest of the human race. But, gradually, you lift your eyes and realize that you are not alone. And that there is hope.

There is nothing quite so beautiful as the hope born from shared experiences. To hear from another walking the same path that it is going to be ok, that there are good treatments and knowledgeable doctors, and that there are stories with happy endings is an amazing thing when you are lost and confused.

Without the extended hand of knowledge, comfort and camaraderie from those who have survived and thrived, life with a rare medical condition would be devoid of hope. That is why days like Rare Disease Day are so important for those people living with rare medical conditions. By coming together to offer support, share information, promote awareness and helping each other through the obstacle course that is life with a rare disease, lives are bettered and the quality of life increases.

The theme this year is ‘Join Together for Better Care’. In light of that, I want to thank all of the people that have had a hand in making our journey through Ehlers Danlos Syndrome a little easier. Thanks to all of the people who have gone before and blazed the trail, so that my daughter can access the best doctors and treatments. Thanks to all of the people who read and comment on this blog – your input is so important, not only for me and my family, but for everyone who ends up here searching for answers. Thanks to our doctors – we have so many good ones who really care and put forth a real effort to help my daughter improve and it is paying off. Thanks to Dr. Diana Driscoll for all of her work in finding answers to the worst parts of EDS, which my daughter just happens to struggle with – my daughter has benefited immensely from all of Dr. D’s efforts and I hate to even think where we would be without Dr. D. Thanks to all the friends and family who have supported us every step of the way, who have prayed for us and have listened to my despair, rants and victories.

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Right now, there is a fierce battle playing out over a disagreement over a girl with a rare disease. Justina Pelletier has been out of her parents’ custody and without medical care for over a year at this point, because a couple doctors at Boston Children’s disagreed with her parents and specialists that Justina has Mitochondrial disease.

I find the timing of these two separate but related battles,  the day we recognize rare diseases coinciding with this desperate battle to save Justina’s life being waged in social media, to be so incredibly appropriate. The theme for this year is ‘Join together for better care’ and that is exactly what is being done for Justina and all of the kids living with rare diseases. When one kid suffers, all of our kids suffer.When we join together, life improves.

May we always join hands and fight when there is a battle to be fought for our kids. Cases like Justina’s are exactly why we need Rare Disease Day and why we have to shout it from the mountain tops: These conditions are real. The pain is real. We are educated. We are a community.  Our kids deserve respect and good medical care. As parents, we intend to ensure that is exactly what our kids get – and we are not alone in our fight.

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