[melanie gornick]

Hey Kari-

I’ll be thinking of you today, I hope your appointment goes well. There is a chart that Scleroderma Education Project released that references blood markers and what they mean…I thought it was very helpful.

Scleroderma Antibodies and Clinical Relevance

I’ve seen specialists at Duke, Mayo and the University of MN. Not sure how far you’re willing to travel but they have all been excellent.

It’s a journey but I can tell you’re strong!

[melanie gornick]

Hi Lizzie-
I waited about 3 months. It was quite apparent that there was something wrong (that I couldn’t hide) but waited to tell them exactly what until I understood it myself. My kids are all older, I have only one left in HS. If I had younger kids I don’t know how I would have handled it.
Anyone reading this post who have younger kids please offer your feedback, I know this question isn’t unique to Lizzie.

[melanie gornick]

Okay, my husband often reminds me to pare back my enthusiasm when I speak to others about life expectancy as to not unintentionally offer false hope. I have a tendency to be uber-optimistic, although diagnosed with diffuse, I am confident I will live to see a cure. Anyhow, that said, I just spoke with someone who has matched my optimism with proof. A random stranger (but no longer) reached out to me via LinkedIn and shared her story. This woman was diagnosed with diffuse scleroderma as a teenager and has lived with it for 43 years! Just a reminder, especially to those newly diagnosed: this is not a death sentence. My intention in sharing this is not to offer false hope, but to remind you to never give up the fight, some of us do and will continue to succumb, however, each day we fight we are one day closer to a cure.

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