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45 years of waiting for a full diagnosis

My journey began at 18 with a series of collapsed lung episodes which eventually were recognzed as coinciding with my menstrual cycle. It took several… Continue reading 45 years of waiting for a full diagnosis

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Anna May’s Journey

Anna May was a high functioning senior preparing for college, working at TJ MAXX and playing on the school tennis team. In January 2014 life… Continue reading Anna May’s Journey

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CYSTIC FIBROSIS

I am 13, but was diagnosed at 10, which is rare because people with Cystic Fibrosis are usually diagnosed at birth.

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Pushing through Cushings

I am 33 years old and was diagnosed with Cushings Disease in January of 2011. I underwent three transphenoidal removals of a pituitary adenoma to… Continue reading Pushing through Cushings

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Dystonia

I struggle with dystonia, tardive dyskinesia from Pharmaceuticals medications from the doctors it’s changed my whole life around and to go from independent to having… Continue reading Dystonia

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Ashlynn 6 years old, to young to have a short life.

Our Ashlynn is 6, she should have the funnest childhood, play outside and run around like anyone else. Ash she is getting into 1st grade… Continue reading Ashlynn 6 years old, to young to have a short life.

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Jordan Kubczak

My son Jordan began getting sick at the age of 12. We where in and out of the hospital for many years the Doctors could… Continue reading Jordan Kubczak

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Regaining hope

When I was first diagnosed with Retinitis Pigmentosa, the words that hit me the hardest were “no treatment” and “no cure.” I basically took those… Continue reading Regaining hope

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EKV what’s that short for?

My son was born with erythrokeratodermia variabilis, or EKV for short, in the Ichthyosis group of skin disorders. It presents at first with large areas… Continue reading EKV what’s that short for?

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