When we’re talking about CF, there is always more to the story.
Yesterday the FDA approved a new drug for the treatment of a small percentage of people with cystic fibrosis (myself and my brother not included) – a drug that will address the root cause of the disease instead of treat the symptoms. The implications from this are potentially wonderful and life-changing!
Josh & I have been trying for a while to get me enrolled in a study based out of Chicago which essentially takes this drug and adapts it to the type of CF that I have. If this study is successful, it would mean that I could have access to the drug well before it hits the market. I’ve been going back & forth with paperwork – consents, health history, records transferring, etc. and last week I got a phone call with the results: I’m eligible to participate.
Also last week: I had a checkup with my doctor and he started me on oral antibiotics for a few weeks to clear up some lingering congestion. This voids my eligibility to participate in the study.
In case that doesn’t do it for ya: I got a call from U of M (my CF clinic) about a second research study that I’m apparently eligible for – it’s for CF patients that have the MRSA bacteria in their lungs. I didn’t know about the MRSA.
After my appointment this past week and the lab culture results, it’s confirmed that I do have this new bacteria. My lungs have a few resident bacteria already (like most CF patients) but it’s been years since a new one came along.
And so here we are. Right after I receive some disheartening news, we are given more reason to have hope. This disease isn’t my favorite, but this life I’m living definitely is.
There’s always more to the story. And we will always have hope.
See the CFF’s announcement of the drug here.