HOW SHORTNESS of BREATH SYMPTOMS LED TO ALPHA-1 DIAGNOSIS
JEAN’s ALPHA-1 STORY
Alpha-1 Unwrapped is an ongoing series where we unpack the truths about Alpha-1 Antitrypsin Deficiency and how it impacts the lives of those with the condition. Here we tell the story of Jean Gray who back in 2013 suffered a shortness in breath, which led to a long road to being diagnosed with Alpha-1.
SHORTNESS of BREATH AFTER CLEANING
It was 2013. I was studying for my Masters in Child Health Nursing. Procrastinating over an assignment, I decided to do some cleaning. I became short of breath very quickly and knew something was not right.
In the past I had been told I had asthma but was not responding to treatment. Allergy tests didn’t show much. My fitness never seemed to improve, even with a personal trainer. I thought of walking with friends but they would have become frustrated with my slow pace. After finishing my Master’s, I started looking for answers. My first clue came when my sister had pneumonia and was told by her specialist that she didn’t have asthma. She also had lymphoma and I remembered reading that this was a risk factor for a genetic disease called alpha-1.
A FAMILY HISTORY OF BREATHING DIFFICULTIES
My mother had asthma for as long as I remember and my father had pleurisy. Several relatives had lung problems, including an uncle who died in his 20s from pneumonia. It was looking genetic. I have also developed syringeo myelia which affects me from T10 to L1 so I can’t lift my right foot more than a couple of inches. This has been made worse by my lungs being overinflated. I asked for an alpha test and it came back 0.2 PiZ.
I now had the task of letting my siblings know that they were also at risk. I never thought for a minute that in 3 years’ time I would stop work. Luckily, I was able to get income protection insurance. A conscientious saving of superannuation is no protection. My dreams of travel were dashed on the rocks. At first I believed the guidelines that said there was no treatment but found that was not true, it is just too expensive. Since then I have talked to and written to politicians, become active with a1oa and try to do what I can.
WHAT DOES THE FUTURE HOLD?
Sadly, I have a daughter with a chronic mental health condition and unfortunately my husband was diagnosed with multiple myeloma, though luckily he is doing well after a stem cell transplant. To top it off, just before I stopped work my house burnt down because I left my laptop plugged in charging and it overheated. I currently have some home care and am hoping not to have to go into an aged care facility as I am only 65. My husband is my rock and I have a gorgeous greyhound, good friends and neighbours. I am still able to sew in my beautiful sewing room.
We will be releasing an ongoing series of Alpha-1 stories in the build up to and throughout Alpha-1 Awareness Month. Stay tuned on our social channels and blog page for more Alpha-1 Unwrapped content.