Member Bio's

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 Val and Marilyn at the 4th International Alpha-1 Patient Congress

 

Dr Val Orchard

I am 63 and was diagnosed with Alpha-1 around 10 years ago. I believe it is hugely under-diagnosed. I have had a lifetime of respiratory problems, Tb, asthma and bronchitis but I had never been tested for Alpha-1. It was only after my brother in the UK was diagnosed 'with a rare genetic disease called Alpha-1 Antitrypsin Deficiency' that I asked to be tested - turns out I am a ZZ the same as him. He smoked and is now on the lung transplant list, thankfully I never smoked! My three sons were all tested so that they could make informed lifestyle choices, they are all carriers (MZ) of the defective gene.

My health has not stopped me from having a full life and a busy scientific career achieved by working in partnership with health professionals and taking control of my health management. I want to give help and support to other Alpha's by sharing experiences and by supplying good quality information to people who are newly diagnosed and encouraging people with symptoms to be tested.

Marilyn Black

I was diagnosed with Alpha-1 in 2006 after my sister was tested and suggested I get tested too. Finding out I was an SZ did not come as a shock as I now had a name for the respiratory problems that I lived with. I have had asthma, allergies, hay fever and bouts of bronchitis since my teens. In later years I struggled with breathlessness when exercising, especially when tramping as any climbing made breathing difficult.

I started my working life as a hairdresser in 1967. The chemicals in the perm solution, hairspray and dye caused me to constantly wheeze and cough and I was diagnosed with asthma. I was advised by the doctor to give up hairdressing after 18 months as the asthma was not going to improve in this environment. I would not have chosen hairdressing as a career if I had the knowledge that I have now. I retrained as a teacher in adult education and worked in this area for many years.

I want to encourage and support those with Alpha-1 and their families through networking.