The word "cure" in the Cystic Fibrosis community is, to say the very least, loaded.
When the gene for CF was discovered in 1989, overzealous scientists predicted the cure would be found within five to ten years. I've spoken to parents of kids who were diagnosed 15 years ago, and were told by their doctors not to worry, they'd have the cure by the kiddo's fifth birthday.
From my very humble CF research, it's clear that scientists, docs, drug companies and even parents have casually used the word 'cure' without thinking about the implications of it not happening. I'm guilty. Big time guilty.
Today was our CF Education day at Children's Hospital. They discussed the new drugs and treatments in the pipeline but our CF expert was very careful never use the "c" word. She said, as a researcher, she has become somewhat bitter because of the many promised cure-alls, like fish oil and curcumin, and then the tragic early research on gene therapy that resulted in the death of a CF patient.
I am quick to tell everyone that the cure is coming. That hopefully before we have the "talk" with Froggy, we will be able to assure her a long and healthy life. As a mom, the "cure" is too tempting, not to wish for, pray for, and sometimes expect.
Realistically, I understand that gene therapy is not anywhere near curing anyone. And because there are thousands of strains of CF, every patient is different, therefore, every patient responds differently to treatments. I don't know if there will be a pill in Froggy's lifetime that eliminates all symptoms of CF. Even if the pulmonary aspect is solved, Froggy may still have pancreatic insufficiency, and the likelihood of CF-related diabetes.
This keeps me up at night. And as difficult as it is to read all the articles, and attend forums, as Froggy's advocate and Mama, it's necessary. I understand the danger in promoting the concept of a cure-all, for a very complicated disease. And I know that when articles suggest a cure, even if it's for 2% of the CF population, it could affect the funding for the necessary research for the other 98% of people with CF whose genetic type was not cured.
However, I do believe that Froggy will live to 100. With preventative care, new inhaled antibiotics, and drugs that can open an alternative chloride channel, I think Froggy will have the privilege of growing old, and wrinkly and cranky, like the rest of us.
I hope I've never offended anyone when I speak so casually about the cure. It's the mama in me that believes that her kiddo is perfect, and brilliant, talented, and special, and it's the mama who believes that there HAS to be a cure. Because the alternative is unthinkable.