COBALAMIN NEWS

"I wanted to become an

Ambassador for the

Pernicious Anaemia Society,

because I've felt increasingly

frustrated and annoyed by

the 'under-diagnosis' of PA,

mis-diagnosis of symptoms

and the dissatisfaction of pa-

tients regarding their Vit B 12

treatment schedules.

I will endeavour to make a

difference here, although it

will be a slow process... but

slow progress is better than

no progress.”

Dr Chris Steele MBE

In this issue The patient’s perspective

10 year anniversary plans

Research news

Get togethers

Treatment updates

Volunteers needed

PASCOC Chair, Martyn Hooper presenting at the recent Parliamentary reception

Introducing our New Ambassador

We are delighted to announce that Dr Chris Steele MBE is now an Ambassador

for the Pernicious Anaemia Society (PASOC). Dr. Chris, a GP with over 35 years’

experience, has been the resident doctor on ITV's ‘This Morning’ daytime maga-

zine show since its launch in 1988.

After listening to PASOC Chairman Martyn Hooper present at Thyroid UK’s confer-

ence in October, Dr Chris later met with Martyn and offered to help in any way he

can. “I am delighted that Dr Chris has agreed to be an ambassador for the socie-

ty” says Martyn. “His reputation, experience and contacts will help the society

raise its profile not only amongst medical professionals but also to the general

public and media”.

Volume 2 Issue 4 May 2015

Know a group of medical professionals who would be interested in finding

out how the new guidelines affect patients? Contact the society and we can

make arrangements to deliver the presentation.

The patient’s perspective A new presentation produced by the society puts across the patients’ perspective

on the new Guidelines on Cobalamin and Folate that were produced by the British

Committee for Standards in Haematology (BCSH).

Aimed at medical professionals, the presentation utilises the findings from the

society’s survey of members published in April 2014 to illustrate how the problems

with the diagnosis of B12 Deficiency that are addressed in the new guidelines have

an impact on patients getting a quick and accurate diagnosis.

While the new guidelines acknowledge the failings of the current test to determine

the B12 status of patients and the inadequacy of the test for intrinsic factor antibod-

ies it is this society that knows how these failings affect our members.

© The Pernicious Anaemia Society 2015. Reg. Charity No. 1147839

New treatments

New treatments for B12 Deficiency have been developed in response to patient

demand. However, these are not available on the NHS which still relies on injec-

tions to correct any deficiency caused by Pernicious Anaemia and the new Guide-

lines favour this form of treatment to others.

Other treatments available at health stores and elsewhere include sub-lingual

sprays, sub-lingual lozenges, nasal sprays, skin patches and high potency tablets.

If you are experiencing a return of your symptoms before your next injection is due

but your doctor refuses to increase the frequency of your injections you may want

to discuss using these different delivery methods with your doctor to supplement

your injections.

The best way to do this is to purchase your preferred method of supplementation

and take this along to the next appointment you have with your doctor so that he

or she is fully aware of what you are considering doing. The efficacy of these

treatments has not been fully evaluated but many members report that they do

help them manage their condition better but be sure to discuss this with your doc-

tor before you start any supplementation.

Research update Jab frequency

The research team that is looking

into why some patients need much

more frequent injections than others

have finally received medical ethics

approval and the programme is

about to begin. Members who have

already registered to take part in

the programme need do no more.

Your details have been sent to the

team and we will contact you if you

are selected to take part in the re-

search.

Fine on 12-weekly jabs?

We need to hear from you!

If you do not experience a return of

any symptoms before your next 12

weekly injection is given please

register for the programme.

Simply go to the link on the homep-

age of the website—if you haven’t

already! The more participants that

are registered the more choice the

research team will have.

How are you feeling?

Dr Heidi Seage of Cardiff Metropoli-

tan University would like to know

how Pernicious Anaemia is affect-

ing your wellbeing. Complete her

short questionnaire you can access

via the members’ area of our web-

site.

Help us help you: Research projects are a vital way of improving the way Pernicious Anaemia is diagnosed and treated. Visit the website to find out more

Fundraising for research driving improved testing and treatment for PA sufferers

© The Pernicious Anaemia Society 2015. Reg. Charity No. 1147839

On no account should you stop receiving your injections

The Thames Path Challenge Thank you to Jessica Sandi who will be taking part in The Thames Path Challenge on 12/13 September. We are very grateful to Jessica for doing this. We are still run purely by volunteers and with a constantly growing membersip, funds have be-come more and more important, not only to keep the basic website run-ning, meetings, telephone and email support service, etc but also to help fund research and campaign for better treatment and diagnosis. It would be fantastic if anyone wanted to show their support in the way of donations to Jessica. See what Jessica is doing here and donate.

Competition winner

Congratulations and thank you to

Maggie Marley, winner of the T-

shirt design competition we ran

at the end of last year.

We are currently getting t-shirts

with Maggie’s design made up

and will let you know when they

are available for you to buy.

Time for a coffee?

Let’s get together

Coffee Morning, Birmingham—Sat, 30 May at 10:30am

Lounge of the Macdonald Burlington Hotel, Burlington Arcade, 126 New Street,

Birmingham B2 4JQ. Free to attend. Friends and family members welcome.

Come and meet the Chair of PASOC, Martyn Hooper as well as fellow sufferers.

Share experiences, coping strategies and other information in an informal setting.

It is often only when patients talk to other patients that they feel that someone

really understands just what it is like to have Pernicious Anaemia.

Plan to attend? Please drop us a line at info@pasoc.org.uk to let us know.

Open Office Saturdays

Want to visit to the society’s Bridgend office’s to talk to some of our volunteers

who do such a good job in dealing with the everyday tasks of running the society?

Perhaps you would like to talk in person with Martyn, the Chairman of the society

or simply find out more of what we do?

We know some people can’t get time off in the week so we are introducing

Open Office Saturdays on an on-demand basis. If you would like to come along to

the office for a chat or just a look around, we will open the office on any Saturday

morning for you to visit. You can bring anyone else along with you – you could

even organise trip with other members from your area.

Want to visit? Just drop us a line at info@pasoc.org.uk with a few weeks’ notice

and let us know how many are coming so that we have enough tea and coffee!

© The Pernicious Anaemia Society 2015. Reg. Charity No. 1147839

Independent support groups

Three new independent

support groups that have

been set up by members:

Frank—Leicestershire

leicester-

shire.pas@gmail.com and

Worcestershire worcester-

shire.pas@gmail.com,

Anabelle—Isle of Man

pas.b12iom@gmail.com

Save the dates

Pernicious Anaemia Week 2015 will run

from 19 – 25 October, with Pernicious

Anaemia Day falling on Wednesday, 21

October.

We plan to hold a meeting for members

to attend on Saturday 24th October so

save the date.

More detail will follow in the next issue

of Cobalamin News.

About us

The Pernicious Anaemia Society was formed in 2006. It is based in Bridgend, south Wales in the UK. It is a registered charity (No. 1147839) and is a limited liability company (Reg. no. 07904047). Overall responsibility for the so-ciety rests with eight trustees. The society is run entirely by volunteers. Day to day decisions are made by the Executive Chairman. The Pernicious Anaemia Soci-ety, Level Four, Brackla House, BRIDGEND, Wales, CF31 1BZ UK Tel: +44(0)1656 769717 Main Contacts Executive Chairman

Martyn Hooper

chair@pasoc.org.uk

Secretary

Michael Stevenson

secretary@pasoc.org.uk

Treasurer

David Connell-Smith

treasurer@pasoc.org.uk

Membership secretary

Carrie-Anne Carr

membership@pasoc.org.uk

Communications

Louise Jones

comms@pasoc.org.uk

Please contact us for details of

overseas delegates.

Email: info@pasoc.org.uk

Website:

Test developments

There have been two major new developments in the tests used to determine

B12 status in patients and whether any deficiency is caused by Pernicious Anae-

mia.

Improving accuracy

It is generally acknowledged that the current test that is used, the Competitive

Binding Luminescence Assay (CBLA), is seriously flawed and gives false high

results in up to 35% of cases. Methylmalonic Acid and Homocysteine are perhaps

better indicators of any deficiency.

A recently published paper shows how, using some very complex mathematics,

it is possible to work out what the patient’s MMA and Homocysteine levels will be.

The maths involved is quite daunting even to those with a background in the sub-

ject, however, it does means that somebody is acknowledging the current issues

and trying to reach a solution.

A major leap forwards

We attended a presentation about another recently developed new test that

shows much more promise. We cannot say too much about this new test but it is

a major leap forward and incorporates the Active B12 test along with three other

tests.

And the amazing thing is that it only needs one drop of blood for analysis. The

plan is that the new machine, currently the size of a table, will be available as a

hand-held device for doctors.

10-year anniversary plans Next year, 2016, we will be celebrating ten years of being a registered charity.

Although the society began in 2004 as an online forum, it was only in July 2006

that it became a registered charity. Four of the original Trustees remain out of a

total of nine.

To celebrate our ‘Tin’ anniversary we will be hosting a conference in June of

2016 where a number of presentations will be made over the course of the day.

We are still finalising details but it will most likely be held in Birmingham which is

central for most people. More details of this, as well as a fundraising initiative to

help the society move forward in the next 10 years, will be announced soon.

© The Pernicious Anaemia Society 2015. Reg. Charity No. 1147839

Volunteers needed

Are you an experienced corporate fundraiser or skilled at database analysis? We want to ensure the society is ‘Fit for the Future’ and need your help. If you can spare even just a little time please call for a chat to see how you can make a differ-ence.

Got other skills you think can help the society? We’d love to hear from you too!