Hi there everyone , does anybody know of or attend a alpha one specialist in the South West of the UK? I am desperate to find one!

[flo1]

I have alpha one antitrypsin deficency and I really would like to attend a local clinic or see a Alpha One Specialist in the South West, I live in Devon and I am currently attending the RF in London although as TB is on the increase this is now becoming a huge worry to me, I was infected with a really bad virus last Sept on my first attendance with them, they are excellant but trying to avoid London! I used to attend ADAPT in Birmingham again the travel is a problem and so I would love to hear from anyone down this side of the UK with alpha one who is seeing someone here, can travel so no probs! as long as it does not involve a major city....many thanks in advance .

[SMasefield]

Hello,

I would advise you to get in touch with Alan and Dawn Heywood-Jones who are amazing sources of information and support with the UK Alpha-1 patient organisation. Plus, they are based in the South West (when not in Spain). Drop Alan an email at [e-mail], and tell him that Sarah from the European Lung Foundation gave you his email address. I am sure that they will give any available advise about specialists in your area. Best wishes, Sarah

[out-for-lunch]

what am I missing .......

I too am A1AD (FEV1 27%) but I've never been told & it's never been suggested I could/should see an A1 specialist.

The support, treatment, advice & meds I receive are exactly the same as given to a normal COPD patient.

....... Am I missing out on any A1AD specialised treatment

Please enlighten me ..........

Cheers.

[SusanneH]

Hi i am Alpha-1 aswell i was diagnosed with Copd in 2004 i have never been offered anything different to a nornal Copd patient.

Even my Consultant has never mentioned it i found i had it after my Gp did a blood test when i was first diagnosed.

[flo1]

To Susanne and Out for Lunch your not really missing out at all in all honesty, there is nothing that the actual specialists here offer us other than put us on a register which they are then funded by the NHS for having us as patients, we are denied a therapy and have been for decades in the UK known as agumentation which replaces the glyco protien we do not make or (make little of) antitrypsin which of course leads us to lung disease, we are born with this defect from the genes we inherit as we have a defect in the actual gene we produce in our liver and it is thwarted by relese so it gets stuck in there and it is very important that your checked with your liver as well as your lungs. I have been visiting these clinics for 7 years and got nowhere frankly although they are able to advise you better on the condition and of course the test is a lot more in depth. We are constantly fighting for our right to therapy, this stablises the condition, however it is by no means a cure. That is something we are still waiting for and hopefully it will come in time for the many that suffer alpha one. If you are on facebook I help run a group called alpha one advocacy and action please feel free to join and send a request I can add you there is a whole 'world of alpha one patients out there' and many of our members are from Europe and USA ....I hope you can join us, it is a disgrace we are being treated as copd patients the disease in character is more like CF ...! and we fight for our voice, right and treatment here in the UK, the alpha one Awareness site is one I know and further know Alan and Dawn I doubt they would be able to advise me on South West Clinicians here as I saw my Consultant yesterday and to his knowledge there is nobody this side of the UK ..UK Alpha One patients are in dire need of spec ialised clinics and of course better treatments and drugs that manage our conditon to the optium , the USA has had therapy since 1983! and most European Countries have access to the drug. I hope this info has helped you , my Consultant see's no point in continuing with the A1AD Specialists until 'replacement therapy' becomes available here and frankly I feel I agree with him....Anything else I can help you with please let me know you can PM me too I will be happy to give you my e mail if you message me ...

[Parvati]

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

London

NW3 2PF

Links for UK Alpha groups - sites and fb:

alpha1awareness.org.uk/

facebook.com/groups/alpha1a...

facebook.com/groups/alpha1u...

Hope this may have been of some help.

[Parvati]

Hi Flo - I live across the border from you in Cornwall and am sorry to say I know of no real specialist Alpha care other than what you have already mentioned. Sorry I can't be of more help - Vanessa

[flo1]

Thanks Vanessa it is really tragic for us in truth, I hope that every alpha gets a specailsed care centre promised for years now here in the UK where we are able to get the care, and of course replacement therapy we all so truly deserve, I live in Torquay so right next door to you..Are you seeing a local Specialist and do they have a understanding of the disease?

[Parvati]

No flo - I don't see an alpha specialist - I just see the usual thoracic consultant at Derriford in Plymouth if I have any problems - the same as for any other COPD patient. I must admit I don't pay much attention to being Alpha - I did have a younger brother with childhood liver disease through it but we didn't know it was Alpha back then, we were just told it was a very rare disease. Had I known I was Alpha then I would never have smoked of course. Really though I don't see myself as any different to any other COPD'er, other than it has caused me to need oxygen sooner than I might have needed it otherwise. I was a 'volunteer patient' yesterday for med students - something I do 2 or 3 times a year. We talked about Alpha as well as my COPD - the younger Doctors are far more aware of it. I did say that I have come across so many people lately with Alpha, and he agreed that since more GP's are testing for it in COPD'ers, many more Alpha's have been found, and it may not be anywhere near as rare as once thought. Also we talked about the fact that all COPD is probably to do with genetic problems of various types, it's just that Alpha1 was the first to be identified. I don't usually mention my Alpha in public because as far as I am concerned I am a COPD'er - COPD is my illness, not the Alpha. The Alpha was a causative factor leading to my illness. Naturally I keep an eye on my liver and don't drink, but I also keep an eye out for those things that can affect all COPD'ers - type2 diabetes, Pulmonary Hypertension, etc. I know Alpha's fear fast deterioration, but then COPD'ers without Alpha can have fast deterioration too - I think we are all pretty much in the same boat. I used to worry about it more, but nowadays I take the attitude that I am living as healthy as I can, feel positive and am happy. Any fundraising or health activism I undertake I do for COPD as a whole, rather than just for the Alpha contingent. I know Alpha has many excellent patient activists and advocates doing great work - but in COPD generally there seems to be comparatively little going on, which is why I decided to work for all COPD'ers generally, regardless of phenotypes etc. All the same, I enjoy getting together with fellow Alpha's at our regional lunch meetings. Last years was in Bodmin - I don't know where this years South West one will be - I should check it out I guess. Must get to bed now - it's unusually late for me - couldn't sleep because of the humidity Talk to you again soon in the 'other place' .... Vanessa x