Wednesday, February 29, 2012

Rare Disease Day

Today is not only Leap Day, it's Rare Disease Day. Rare Disease Day, now in it's fifth year, is a day to promote awareness and advocacy around the world for the millions of people affected by a rare disease.
I am one of the millions.
I have three rare diseases:
Scleroderma, a complicated autoimmune disorder. The progression of Scleroderma led to problems in my lungs including:
Pulmonary fibrosis, scarring of the lungs.
Pulmonary Hypertension, high blood pressure in the lungs (this is much different than high blood pressure).

These are not good things. I take a very long list of medications. I have a team of five doctors. I am poked with a needle once per month for bloodwork, and I undergo a variety of medical tests each year. I am limited in my day to day activities. I worry about the future for me and my family.

These three rare diseases not only affect me but all those who know and love me, especially T and the kids. It's a bumpy road for all of us. I have touched on this topic once before, in the post "Making Lemonade." Despite all the bad that comes with living with rare chronic illness, there are good things on this road:

2. Resilience: This means facing life’s difficulties with courage and patience – refusing to give up. I am learning this coping skill every day, and hopefully passing it along to others as well, most importantly to my children.

3. Faith: This is actually something I have been struggling with a lot lately. How can I strengthen my faith in God as I experience difficult challenges? How can I be the best version of myself despite living with a serious chronic illness? How can I pray for others with rare diseases who face the same, or even more, challenges than me?

1. Connections: I have met some awesome people both in person and online on this journey that I would not have met otherwise. I know four people who have successfully undergone a lung transplant - truly amazing! I have come to know terrific doctors, nurses, respiratory therapists, and other healthcare workers who genuinely care about their patients. I have friends who can relate to my struggles and worries. They are a source of strength, hope, caring, and love.
So on this day, take a leap! Pray for those living with a rare disease Share this blog and video with family and friends. Thank you.

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