Hi I'm new here I'm 37 and been diagnosed with moderate emphysema , copd , asthma 
I've had loads of test which found the defiency
I'm so breathless all the time it worrys me that it progressing really quick
Does anyone know if the defency makes it progress quicker? Sorry about spelling
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Hi Nik37,
I do not know if it would make it progress any quicker, I believe the deficiency is a cause of Enphysema is that what you have been told.? and also it can cause you to be very breathless. But I would think with similar care as usual COPD folk you should be alright.
Is there a treatment your GP can give for the deficiency,?
Ivyleaf
Hello Nik
Forget the spelling sweetie - it's fine.
I'm so sorry that you are breathless all the time - it's really scary (it terrifies me).
I hope that your Doctors are good and give you really good treatment (esecially as you are so very young).
I hadn't heard of A1AT before so I 'Googled' it. I found the following:
"The outlook for most people with A1AT deficiency is good – many won’t even know they have the condition while others can keep healthy with careful management. Although progressive liver or lung disease affects only a minority, it can be serious, so regular monitoring of those with the condition is important."
"There's no specific treatment or cure for A1AT deficiency, but some doctors are testing whether giving patients regular (usually weekly) injections of replacement A1AT enzyme may be of benefit. This replacement enzyme, which is extracted from human blood, is used routinely in some countries but not as yet in the UK."
"People with A1AD deficiency are especially vulnerable to exposure to chemical and particulate environmental pollutants, which can aggravate both lung and liver disease. For this reason the most important thing someone with A1AT deficiency can do for their health is not to smoke and to avoid people who smoke around them. They are also very susceptible to recurrent lung infections, so it's particularly important they receive immunisation against pneumococcal and flu infections."
"Exercise will boost the immune system to protect the body from infection and is also essential. Medicines to improve lung function and oxygen therapy are also regularly used if lung damage and emphysema have developed."
I really hope that you are being treated well for your condition and that you have all the information you need. I'm sure that the people on this website will help you with great advice.
Good luck Nik
Annec
xxxxx
Hi Nik
I don't know much about alpha : this is a quite knowledgeable site tho I don't know if I remember who has exactly what .... we are united by having ********** lungs
I think you need to phone the BLF help line ....03000 030 555
.hugely knowledgeable, helpful and generally supportive also on blf.org.uk/Home
Take care and all the best ... be back here sometime to let us know how you are doing
Bo
Hi your meds should be helping ... if doing lots of test sounds like you are getting good care the wil help
But geting stressed will cause negative effect with with your medication a also take it your on inhalers ... If your trying to do. What you use to that will not help ... Need to slow down and keep to apointments and see gp reguly
Give BLF a call or email
Try not to worrie ... All the best 
Hi thanks yeah I understand the defiency has caused the empheysema . Nothing can be done for the defiency and only know that I inherited the worse form of it x
Thank u all for your comments x I'm trying to stay positive as am a single mum of 3 youngest being 5 yrs old and I'm widowed so no hubby to help x
Do find the hardest bit not being able to do the general housework with out being breathless and feeling tired all the time x
Is hard but at least you have kids to distract you .. Just need to slow down am sure you will be fine
All the best
Hello again Nik
You must ask the BLF Helpline if you are eligible for help in your home.
A single mum with three children, and a breathing disorder, surely needs someone to help her in the home.
I don't know if you are entitled to a home help but in my view (and I'm sure in the view of others) you should be entitled.
I wish you well.
Annec
xxxxx
I have 3 inhalers and also on anti depressant which I have been on for a few years , I am being seen at respiratory clinic and see my gp regular been sothering with cough and breathlessness for about 3 yrs now but finally got diagnosed 2 weeks ago
Think thay will change inhalers if coughing up lots of gunk ... But knowing is better than not so now thay can get to grips with it
Not coughing up anything not just a wheezy cough xx
Thanks all seeing gp tomorrow so will see what she has to say thanks x
Sounds like your not doing to bad and you getting good care ... Probly trying to do to much
Take it easy hope all go's well at doc's all the best
what on earth is this deficiency- I have never heard of it?
Alpha 1 antitrypsin defiency is genetic and I have been told I have a rare form x
Hi, it's a tough one. I too have Alpha 1 Antitrypsin Deficiency and was diagnosed with COPD also when I was 37, that was 15 years ago. The A1AD is the cause of your condition, and it will speed up the deterioration. Most of your tests will have been around lung function and COPD as the A1AD test is just a simple blood test. You need to contact the ADAPT project at Queen Elizabeth Hospital in Birmingham. It is an funded research programme looking for a cure for A1AD. It is still run by Prof Robert Stockley, the man that discovered the illness in the first place. Knowing the cause is half the battle, and keeping fit and active helps too. ADAPT are real experts and will give you the best advice on medication and treatments. You will also be on their list when they find a cure, and one day they will!
Alpha 1-antitrypsin deficiency was discovered in 1963 by Carl-Bertil Laurell.
Apologies, you are of course correct, Wikipedia. However the point is the Prof Stockley is the leading authority in the UK on this lady's illness and remains the best person for her contact. Especially as Carl Bertil has passed away.
Hi Nik37, I have had Alph 1 for 25yrs discovered at 42yrs old!!! I am under the ADAPT team in Birmingham , if you would like to chat with me send a p message and I will help you all I can!! Pat xx
Hi Nik, I tried to send along mess last night!!! I have the same pi z as you, but it would not send!! My consultant sent me to ADAPT 3 yrs ago and I go every year. I would gladly speak with you my num is O7720351534 take care Pat x
Hi Nik37, Here is a link to the Alpha-1 UK Support Group alpha1.org.uk/ you can either join the e-mail support group or our Facebook group where you will be in contact with Alpha patients, their families, carers and friends living throughout the UK and overseas. We are a friendly group, and between us we have a wealth of knowledge and experience to share. There is always someone to help with any worries or queries you might have.If you would like our Alpha-1 Information Pack please e-mail me your address to infoalpha1uk@googlemail.com Take care John Mugford (Chairman/Trustee PiZZ)
I have been told I have a mild form of alpher1? But my gp will not refer me to Birmingham.Also I have not been told what gene type I am.Now my daughter is being sent for a breathing test and the hospital do not want to test her for alpher 1.
waited 2 years healthunlocked.com/blf/post....
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Recent alpha 1 antitrypsin deficiency diagnosed
Alpha one antitrypsin deficiency 
alpha 1
