Placing Hope in Research

I'm going to Birmingham, Alabama, for an Alpha-1 lung study. Ever since I was diagnosed with Alpha-1, I have tried to do everything I can to help find a cure.

Knowing that I have a rare genetic disorder makes me want to find a cure even more.

My patient journey in medical studies

Thinking about my kids or grandkids going through anything like I have makes me so sad and feel guilty that I have passed this down to my kids and possibly my grandkids. I know it's not my fault, but I still feel that way.

I have done a few studies over the years, including a five-year liver study, an experimental breathing medication, and a few online panels. The one I'm going to be doing now is the Alpha-1 biomarker Consortium.

A biomarker is a feature or characteristic that can signal or predict how well the body responds to a treatment for a condition or disease or if a condition or disease is getting better or worse. Biomarkers can be detected or measured in blood, other body fluids, or tissues.

They are a sign of a normal or abnormal process or of a condition or disease. The good thing about doing this study over the next 36 months is that I can still enroll in other studies.

The initial appointment

For my first appointment, I will have blood work, a breathing test, a CT scan, a physical assessment, a sputum sample, and answer a questionnaire. After this appointment, I will come back in 18 months and then again 18 months after that for the same tests.

There were many different site hospitals that I could go to for this study, but going to Alabama, one was on the way to our yearly road trip that my husband and I try to do every year around this time. I have written other articles about us saving for and taking our annual trip, and if you are interested, you can read one here.

I hope that they can discover something about my lungs that can help in the future. I have always been amazed at how stable my lungs have been over the past 13+ years since I was diagnosed.

A commitment to helping in research

One doctor told me that I probably wouldn't live more than a couple of years or at least until I needed a transplant. Thankfully, I have done significantly better than that.

We never know when our last day will be and should not rely on doctors to tell us when that day is. There is only one who knows that day for sure.

How do you feel about medical studies? Have you or anyone that you know participated in any type of study? Please share with us in the comments below.