Cystic Fibrosis (CF)…

Imagine a progressive disease of breathing problems so severe your only chance is a double lung transplant—requiring a person newly deceased and with previously approved permission to donate body parts—an operation you may not survive.

That’s just the beginning; also, there are digestive difficulties: your body can’t absorb enough nutrients, so that you are starving even as you eat.

Expect constant pain in your face: sinusitis.

Early osteoporosis (bone thinning) and liver disease.

Reproductive problems: in a male the vas deferens (tube-like connection between penis and testicles) is absent, so the sperm cannot travel. Women often have a difficult time getting pregnant.

As a side effect, you may get diabetes. (Hard to believe this is just one disease!)

To stay alive? You need respiratory therapy, two to six hours every day, no days off—and even so, you will almost certainly die young.

That’s Cystic Fibrosis.

In 2003, in the struggle to pass California’s stem cell initiative, Proposition 71, I heard a really excellent speaker talk about this nightmare disease. It struck home to me, because I had bronchitis as a child. When she described breathing through mucous-narrowed airways like sucking air through a straw, I understood that.

But Cystic Fibrosis is so much more.

In CF, thick heavy mucous clogs the lungs, so much you have to use a mechanical vest. This thumps the chest and helps dislodge the mucous so you can cough it up. Prior to the invention of the vest, you would have to rely on others to pound on your chest and back, two or three times a day.

A few days ago, when I was looking up information about CF, I ran across a speaker with an unusual name, Siri Vaeth… it was her, the excellent speaker!

Currently the Programs and Outreach Manager for an organization called the Cystic Fibrosis Research, Inc. (CFRI), Siri Vaeth was still doing what she had been doing then, advocating for patients.

For her, it was personal.

“My daughter Tess was diagnosed with cystic fibrosis in 1995 when she was five months old. In addition to her extreme failure to thrive, she developed pneumonia. I have feared for her survival ever since…

“(Because of lung infections) she has had multiple lengthy hospitalizations … five plus surgeries, and countless multi-week intravenous treatments.

“She takes nearly 50 pills a day, injects insulin to manage CF-related diabetes…and spends a minimum of two hours a day doing respiratory therapy.

“But she is a warrior, powering her way through the physical challenges, pursuing her life goals.”

As for her organization, Cystic Fibrosis Research Inc., Siri says it has been:

“a tremendous resource and…community for me since Tess’ diagnosis…We provide programs to the nationwide CF community. We fund innovative research, we advocate on…the state and federal level, providing educational conferences, podcasts and printed resources…counseling, support groups, Mindfulness-based Stress Reduction classes—we are small but mighty!”.—Siri Vaeth, personal communication.

This post originally appeared on HuffPost. 

Don C. Reed is Vice President of Public Policy for Americans for Cures, and he is the author of the forthcoming book, CALIFORNIA CURES: How California is Challenging Chronic Disease: How We Are Beginning to Win—and Why We Must Do It Again! You can learn more here.