Hi, my name is Kev Terry (drummer for Foe Fighters) and in 2010 I was diagnosed with A1AD (Alpha 1 Antitrypsin Deficiency) and bullous emphysema (lung disease). Although this is a terminal disease, science is improving every day and there is hope that new technologies will become available in the near future that will be able to prolong patient’s lives. My aim is to raise awareness and as much money as possible to help with research.
A brief history
A1AD is a genetic disorder that can be inherited from one or even both parents. There are several different combinations of A1AD which can be more/less damaging than my own, I am an MS. Alpha 1 Antitrypsin is a type of protein that is made in your liver and it protects your lungs, if you have a deficiency it leaves your lungs unprotected and open to diseases. I also smoked for 20 years without knowing that I had this genetic disorder which has sped up the damage to my lungs. I myself have bullous emphysema which means my lungs have cysts which can burst and cause lungs to collapse (this has happened to me twice now). Another umbrella term for all lung disease is COPD, this name is becoming more commonly known but people are still confused by it. A1AD is even lesser known and many general practice doctors still dismiss it because they are not familiar with it.
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Over a period of 10 years I complained of chest pains to various doctors but they all fobbed me off with various explanations, which at the time I believed as I am not a doctor. It wasn’t until just over 2 years ago that I decided something was definitely wrong with one if not both my lungs but on telling my doctor he told me to take anadin and it would sort it out because it was just a pulled muscle!! I had been told this before and this time I had done my own research and I demanded an x-ray to be arranged or I wouldn’t leave his office. I had an x-ray and was told that I had lung disease. My doctor gave me no apology! I had to have an MRI scan but my specialist told me to only expect bad news. After 4 weeks of thinking I only had 6 months to a year left to live the MRI results came back, my lungs were not as diseased as first thought but I now found out that I had 20-30 cysts on and within them (this made my lungs seem more damaged on the x-ray).
Although I seem alright at the moment, I have regular tests and may need an operation to have a third of each lung removed in the future. I do suffer with lung pain most days and I also have to stay away from people with chest infections or heavy colds as this can turn into pneumonia. Every year I have a Flu jab and every five years I have to have a Pneumonia jab but these do not completely protect me so I now try to keep as fit as possible and eat a well balanced diet and avoid things that can affect me such as open fires, cigarette smoke, fireworks, sprays, dust and barbecues. If I can raise awareness to help others see the signs and symptoms then I will feel like I am doing my duty.
http://www.bbc.co.uk/health/physical_health/conditions/alpha1.shtml
http://www.nhs.uk/conditions/chronic-obstructive-pulmonary-disease/Pages/Introduction.aspx
http://www.alpha1.org.uk/50th-anniversary-discovery-of-a1ad.html
19th January 2013