Just Diagnosed - Next Step
Become informed - please use the links from this page.
Get in touch with fellow sufferers, their experience can make yours easier.
Come along to the next meeting of the West Midlands Group
Ask questions of the medical professionals with whom you deal and don't necessarily accept the first answer.
Seek genetic counselling so that you can grasp the full implications for yourself and your family.
West Midlands Support Group
What we aim to do:
- act as a local focus of support for sufferers and their carers;
- promote awareness amoung the general public and all medical professionals in our area;
- act as a forum which will allow for the development of better understanding between the medical establishment and those suffering with this complex illness;
- work in conjunction with other groups locally, nationally and internationally to bring about better understanding and care in relation to Haemochromatosis.
Local Support Group Meetings
We currently hold two meetings eachyear, one in the Spring and one each Autumn. You don't need to wait until the time of the meetings to contact us as we are always happy to hear from you and to try and help. In fact the sooner you get in touch the sooner we can send you our information pack on Haemochromatosis. Also, if you contact us we can put you on our list of recipients to receive any information that may interest you in the future, including details about upcoming meetings.
The next West Midlands support group meeting will be held in the Spring of 2014, details to be arranged. For full details contact Kieran by phone on; 0121 457 8986 or by e-mail at; info@Haemochromatosis WM.org.uk
- St Nicolasí Place
- 81 The Green
- West Midlands
- B38 8RU
For a write up from the Autum 2013 support group meeting,
St Nicolas Center
Haemochromatosis Society UK
The UK Society operates a help line for people with concerns about the
condition and its treatment;
The Society also distributes an informative leaflet, handbook and a quarterly newsletter to members;
Other services the UK Society offers:
- puts members in contact with other members so as to share their experiences;
- maintains a website supplying up to date information about Haemochromatosis and useful links to other sites;
- promotes greater knowledge of Haemochromatosis both among doctors and the general public;
- supports research into Haemochromatosis and its treatment.
The Unexpected Consequences of Iron Overload
A spoof thriller...........
James Minter, fiction author, announces the release of his latest book ĎThe Unexpected Consequences Iron Overloadí with 100% of profits being donated Haemochromatosis Society..
Since the book became available mid-October, Iíve been busy marketing it to all and sundry. Like all these things it takes some time to get momentum but my efforts are starting to show some success. Iím using social networking as a quick and cost effective way to get visibility Ė Twitter and Facebook. Most notable, I managed to get Stephen Fry to tweet his 4.5 million followers. The tweet promoted both Haemochromatosis and the book. Within 5 minutes of the tweet being sent over 1,000 people visited my website (www.jamesminter.com) for more information. From that book sales followed Ė not as many as I hoped but itís a start. In addition Iím working on getting tweets from a number of high profile people Ė Bill Gates, Eddie Izzard, Oprah Winfrey, Cold Play (Guy Barryman), Terry Wogan and Adele Ė to name but a few. An eclectic array of individuals but these are people who do a lot of charity support work, are prepared to tweet and have very large followings. Follow me on Twitter @james_minter to keep abreast of developments.
Facebook is also a useful tool for promotion and has generated plenty of interest worldwide. If youíre not a friend of Haemochromatosis page (www.facebook.com/groups/haemochromatosis/ please sign up Ė its free and a great way to share with others who have the condition. There are many useful tips and a get sense of community. The page has some 750 members and growing. If youíre not great with computers get your children or grandchildren to set you up a Facebook account.
Additionally Iím using more traditional marketing techniques Ė newspaper, radio and group presentations and the like. Iíve undertaken several radio interviews including 105.9 Academy FM the community radio station in Folkestone, and Radio KINF 99.1, Boise, Idaho USA. BBC Radio Gloucestershire, Winchcombe Community Radio and North Cotswolds Community Radio are all in my sights. Also articles are in the Stow on the Wold Times, December edition and fingers crossed, Cotswold Life magazine. Iíve several presentations lined up with Probus and a local WI group. Iím happy to come and talk to anyone so if you have a local group who are prepared to listen let me know. Iíve put together a PowerPoint presentation which Iím happy to share with others if they have a need for it.
What is your experience with holiday insurance and Haemochromatosis?
"In order to have valid travel insurance you must declare to your insurance company any existing illness or treatment that you are receiving."
"In order to have valid travel insurance you must declare to your insurance company any existing illness or treatment that you are receiving.".
In most cases this statement carries with it little complexity. It seems an obvious necessity that one must do this to obtain holiday insurance.
However, the multi-functional nature of Haemochromatosis and the possibility that it can, potentially, affect so many areas of the body raises the question whether you will, in fact, be covered in case you need to make a claim.
How much information should you give your insurer about the condition? Do they know about Haemochromatosis? Will highlighting the complexity of Haemochromatosis put you in a better position regarding any future claim or will it just load the price of the policy or lead to a refusal of provision?
All these questions, and many more, are encouraging us in the Haemochromatosis West Midlands support group to place the issue of holiday insurance and Haemochromatosis centre stage. Please read more on this site and please forward to us stories of your experiences with insurance.
Have you had problems? made a claim? or been refused insurance cover because of Haemochromatosis? Let us know.
Haemochromatosis and Inheritance
A member's study of genetics and Haemochromatosis
Hereditary Haemochromatosis (or Genetic Haemochromatosis) is a fairly uncommon genetically-caused condition in which excess iron accumulates in the tissues of the body over a period of years. This iron overload can seriously damage major organs, causing prolonged ill-health and early death. There are four main Types and a number of sub-Types, and the risk varies between these............. READ MORE
News and Events
Next West Midlands Support Group Meeting
The next support group meeting will be held in the Autum of 2014
Full details will be available later in the year, so check here again
Read details about the Spring 2014 meeting
Merseyside and North West Haemochromatosis Support Group
Awaiting details of the next Merseyside and North West group meeting
For further details
British Liver Trust
West Midlands Support Group report from the British Liver Trust Support Group Conference
PPI Research Panel Member's Report
Haemochromatosis; A Suffererís Point of View;
Read about a member's visit to a local health facility and their brush with the other view of Haemochromatosis
Raw Oysters for Lunch?
Warning to all seafood cognisors!