Hi out-for lunch, et al - You can ask your GP to refer you to the Royal Free for a thorough check up. It is true of course that we are treated the same as other COPD'ers, but the RF will check out your liver and anything else that needs looking into too. Also if you have never been to any of the annual regional Alpha get togethers, it is well worth going. Apart from it being lovely to meet fellow alphas you can glean a lot of imformation from them - as well as tucking into a fine lunch - you can take your family to these events too. The specialist alpha 'MOT' at the RF only started up about a year ago so that may be why you or your GP/ consultant may not be aware of it. If you join the alpha groups they will provideyou with booklets etc not only for yourself, family and friends to read, but for you to give to your GP practice too so that everyone can be up to speed on what being Alpha entails. Vanessa.
Contact Info for the RF:
London Alpha-1-Antitrypsin Clinic
An Alpha-1 Clinic has been established at the Royal Free Hospital in North London. The clinic is run by Dr John Hurst, Dr Bibek Gooptu and Professor David Lomas and has been designed to cover all aspects of antitrypsin deficiency. It is a joint clinic run by hepatologists (liver doctors) and respiratory physicians. Individuals referred to the clinic will have blood tests, chest X-rays and lung function tests as well as liver scans. The clinic will also offer opportunities to take part in research studies aimed at understanding antitrypsin deficiency and developing a cure.
Referrals can be made to Dr Hurst at:
The London Alpha-1-Antitrypsin Clinic
Respiratory Medicine GF673
Royal Free Hospital
Links for UK Alpha groups - sites and fb:
Hope this may have been of some help.