Today is Rare Disease Day

Let’s celebrate YOU and me today. Remember how you were sick for so long and no one had any idea what was wrong?

You finally got your rare disease diagnosis- did you feel Joy? Excitement? Relief? Or a combination of all of these – because now you know what is wrong?

Let’s meet some famous and non- famous (us) people who are living with Rare Disease.

I’ll start with Selma Blair since many of us saw her walking the red carpet at the Oscars. WITH A CANE! Selma had been struggling- not knowing – not coping- wondering. When she was diagnosed last summer – she cried with relief. MS is a chronic and unpredictable disease of the central nervous system. Selma was in an exacerbation of MS when she was interviewed. She walks with a cane- and she has spasmodic dysphonia-affecting the voice muscles in the larynx.

Tammy was diagnosed with an aggressive MS in 2009. During that time, Tammy also had a stroke – AND then was diagnosed with cancer! She trained herself to work on dexterity and has been improving. Tammy takes MS meds and cancer medication for 10 years. She feels blessed and fortunate. Living with adversity makes you appreciate life.

So you’ve been reading about my journey with sepsis. Lately, I’ve read of several famous people who’ve died in the last few months- the cause was sepsis. Last summer, Matthew Perry was in the hospital, having a GI perforation repaired. He ended up with Sepsis- his stay was a full 3 months due to organ damage.

Another Minnesotan with Primary Immunodeficiency, Kristi, has been sick her whole life – but she’s gotten worse as she has grown older. When she finally got her diagnosis- she felt scared- but also had hope. Now she has a name for her illness and is getting treatment. ‘This life can be very lonely and scary. My ZEBRA family is a lifesaver’. And to that end – Kristi was part of our ZEBRA DAZZLE last summer.

Another famous person announced last week that he would be making his final tour. Peter Frampton was diagnosed with inclusion body Myositis. It’s a progressive muscle disorder. It will weaken the muscles in his legs, arms, fingers and wrists. There is no treatment for this inflammatory disease.

Mandatory Credit: Photo by Larry Marano/REX/Shutterstock (8962045l) Peter Frampton Peter Frampton in concert at the Seminole Hard Rock Hotel and Casino, Hollywood, USA – 14 Jul 2017

After reading about these rare disease patients- I hope that you feel the strength and resolve it takes to live this life.

As we celebrate RARE DISEASE DAY – hats off to all of us.



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