Alpha-1 Antitrypsin Deficiency Support from Alpha 1 Awareness UK


Welcome to Alpha-1 Awareness UK

AATD or alpha-1 antitrypsin deficiency is a lack of the protein alpha-1 antitrypsin (AAT) which is produced in the liver. The main job of AAT is to protect the lungs. A deficiency can lead to life-threatening lung and/or liver disease.

The first signs and symptoms of lung disease caused by alpha-1 antitrypsin deficiency usually appear between ages 20 and 50.
The symptoms are:

  • shortness of breath following mild activity,
  • reduced ability to exercise, and
  • wheezing

About ten percent of infants with the deficiency show signs of liver damage at birth. Fifteen percent of adult Alphas also develop liver disease.

Only a small fraction of alpha-1 antitrypsin deficient patients in the United Kingdom are aware of the causes of their condition.

 

 

 


Information Day
Holiday Inn Bristol Filton, Filton Road, Hambrook, Bristol BS16 1QX
SATURDAY OCTOBER 29th 2016
10.30am-3.45pm

 

We am pleased to say we are once again holding an Information Day this year and would very like to invite you to join us, as those of you who have joined us before know, the day provides a good opportunity to meet with other Alphas and their families, along with hearing and chatting to expert speakers in the field of Alpha 1, at the moment we have confirmed John Hurst from the Alpha 1 Clinic at the Royal Free Hospital in London, as well as Bill Griffiths a liver consultant at Addenbrookes Hospital, Cambridge, we are hoping also to have a children’s specialist, this is still to be confirmed but you can be sure it will as ever be an interesting day. There will of course be opportunities to ask questions of our specialists.

The Holiday Inn in Filton is just off Junction 1 of the M32, it is about 2 miles from Parkway train station and is about 4 miles from Bristol Bus Station in the centre of Bristol, so is very easy to get to.

As always we will have tea & coffee when you arrive, with a break midway for a buffet lunch and tea & coffee in the afternoon, before we end our day. The room we have booked is on the ground floor as is the restaurant. We know how important it is for parents to be able to attend and not have to worry about their children so we will have a crèche available, the children will join us for lunch and the hotel are offering a menu for the children.

As ever there is no charge for the day, the only thing you will need to pay for is if you buy a drink form the bar at lunchtime. You will be able to claim a contribution towards your travel costs on the day from our treasurer.

The Holiday Inn are offering us a limited number of rooms for overnight stays at a special rate of £75 per room, with breakfast. To take advantage of this special price you need to ring the Reservations Dept. at the Hotel on 0117 910 4271 quoting reference: URF all rooms and rates are strictly subject to availability at time of booking, so if you wish to take advantage of this special price please contact them asap.
It would be lovely to see you there, as you will know if you have attended our Information Days before, it is a chance to meet up with old friends, meet new ones, put names to faces of people you have only “chatted” to on our Facebook Group and most of all share your experiences of Alpha 1, there is always lots of chat and laughter and nearly everyone goes home having learnt something new from either one of our speakers or from other members attending the day.

I look forward to hearing from you very soon and hopefully seeing you on 29th October.If you are interesting in going, please drop us an email at info@alpha1awareness.org.uk. Don’t forget the day is open to not only you but any family members who wish to find out more about Alpha 1.


Fund raisers

 

SPONSORED EUROPEAN CHARITY MOTOR BIKE RIDE
Supporting Alpha 1 Awareness UK & Alpha 1 Antitrypsin Research Programme at the Queen Elizabeth Hospital, Birmingham
One of the members of Alpha 1 Awareness UK, Mario Bianchi, who himself is a PiZZ Alpha, is planning to organise a Sponsored Charity Motor Bike Ride in the Spring of next year, from 22nd April – 30th April, to raise funds for Alpha 1 Awareness UK and the Alpha 1 Antitrypsin Research at Queen Elizabeth Hospital, Birmingham.
The plan is to set off from the QE Hospital on Saturday 22nd April to ride through France, Italy & Sicily having three overnight stops, to the final destination of Malta, where you will have a 2 night stop over before returning by the same route and same stop overs to the QE Hospital on Sunday 30th April. Mario says there will be at least 2 experienced motorcycle marshals with European riding experience, for safety. Mario has secured a good accommodation deal in Malta and is looking at other stop overs through Europe.

Are you or any of your family and friends an experienced motor cyclist and would you like to join this great bike ride, through Europe? If so please contact Mario, he would love to hear from you and can give you more information, about routes, accommodation etc you can email him at mariosuperio@hotmail.com or you can contact Alpha 1 Awareness UK at secretary@alpha1awareness.org.uk or the above address and I can forward your messages to Mario. Many biker groups are brilliant at supporting Charities, so please spread the word and let see if we can have a real good size group travelling through Europe, Mario is prepared to put in all the hard work organising the trip as well as taking part himself, so please support him.

 


Below is some helpfull information from the British Lung Foundation

Welfare benefits
Are you living on a lower income because of a lung condition? You might be entitled to extra support.
Read our welfare benefits information >

Take part in IPF Week
IPF Week starts on 17 September. IPF is a condition that makes the lungs thick and hard. It has no cure. Let’s increase awareness and raise funds for research and support.
Get involved with IPF Week >

Time to quit smoking?
If you smoke, quitting is the best thing you can do for your health. Find out why, and how you can take that first step.
Time to quit >

9 things people with lung disease want you to know
How many of these can you relate to? Ann shares her experience of living with a lung condition
Read her blog >

 

 

Help for Alphas with Travel Insurance

Dear Alpha – 1 Awareness UK,

We are delighted to report that we continually have encouraging response from many patients and their families who have been referred to us for travel insurance advice via various organisations such as Macmillan, British Heart foundation & Major hospitals, and many others.  Please visit our website www.jdtravelinsurance.co.uk

JD Travel has spent more than 30 years arranging quality travel insurance at competitive prices for people who have had difficulty in obtaining adequate cover due to all types of pre existing medical conditions and disabilities.

Benefits of using JD Travel Insurance:

Every application is dealt with on an individual and confidential basis.

  • No upper-age limits for single trip travel insurance;
  • European & Worldwide coverage and medical assistance;
  • Full cover for claims arising from pre-existing medical conditions;
  • The most competitive rates for single trip and annual multi-trip policies;
  • Information about local health care facilities in all destinations;
  • A knowledgeable team with many years of experience in this field.

If you would like us to send you some of our leaflets to distribute, please contact us by telephone on 0344 2474749 or email and we will arrange for some to be posted to you immediately.

 

 

 

 

 


Online Charity Shop

Buy Alpha-1 Awareness UK-branded items and raise charity funds. 

Follow the link at the top of this page or go to our online charity shop at www.alpha1shop.org.uk  – where you can purchase all kinds of fabulous gifts, handy everyday items, stylish clothing and shopping bags, Christmas cards and other essentials that will help further the cause of AATD awareness!  Show your support for Alpha-1 Awareness UK, spread the word about Alpha-1, and tell your friends about the new shop!  Best of all, come along and buy something – every purchase helps support Alphas in Britain.

This website is run by Alphas and their carers. We do our very best to ensure that all information shown here is up-to-date and accurate. However, you should always consult your own GP or other medical professional if you have the slightest concerns about your health.

Donate with JustGiving

FIND-A1

The FIND-A1 project is designed to engage patients, doctors, nurses and other medical healthcare providers in the detection of the many alpha-1 antitrypsin deficient (A1AT/AATD) patients who are currently not diagnosed, or who are diagnosed as having some other condition.


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