Kerry Association in Dublin

Dear Members Welcome to our February 2017 newsletter. We were delighted to recently announce our 2017 Kerry Person of the Year as Ted Moynihan, a tireless fundraiser and campaigner on behalf of the Kerry Hospice Foundation, and our Laochra Chiarraí recipients as Forbairt na Dromada Teo (Dromid Community Development Company). The announcements were made in the beautiful surroundings of Iveagh House, Department of Foreign Affairs, St. Stephen’s Green, on 12th January by our Cathaoirleach, Leesha Duffy. The Kerry Hospice Foundation funds a wide range of palliative care services to patients in Kerry dealing with serious illness. Ted, a native of Blennerville, was instrumental in organising the first ever fund-raiser for the Kerry Hospice with a 150 mile walk along the Kerry way on the Iveragh Peninsula in 1990. Through Ted’s fund raising efforts, a Palliative Care Facility was opened in 2007 and recently in 2016, the sod has been turned on a new palliative care in-patient unit in the Day Care Centre in Tralee which will consist of 15 beds, costing €6.2 million. During her tribute to Ted, the Cathaoirleach said “this award is presented in recognition of the contribution he has made to the Kerry Hospice Foundation over the past 26 years. In the Immortal words of the late President Kennedy “Ask not what your country can do for you, rather what you can do for your country”. We are delighted to honour Ted for all he has done for the people of Kerry. Forbairt na Dromada Teo (Dromid Community Development Company) have been chosen to receive the Laochra Chiarraí award which recognises exemplary leadership in community activity in the County. 10 kilometres east of Waterville on Kerry’s Iveragh peninsula is the small parish of Dromid. Forbarit na Dromada Teo was established in 1996 when a number of parishioners recognised that isolation was having a detrimental effect on the area. Since then it has provided services to the local community ranging from Child-care to Elderly Programmes, a Respite Service, Language Classes, Enterprise units and a Community Hall. The Cathaoirleach commented “Through so much voluntary work it changed the area forever in a positive way with all the excellent services and amenities it now provides”. We hope to see you all at Oíche Chiarraí on Saturday 4th March as we honour Ted and Forbairt na Dromada.

Kerry Person of the Year, Ted Moynihan with Cathaoirleach of the Kerry Association, Leesha Duffy

Leesha with Michael Ryan, Chairperson and Cáit Ní Chonaill, Secretary of Forbairt na Dromada Teo

Your Committee: President Christy McCarthy Vice President Michael O’Regan Cathaoirleach Leesha Duffy

Secretary Mary Shanahan

Assistant Secretary Keelin Kissane Joint Treasurers Marie Bowler

PRO Maurice Moynihan Committee Members Aoife Corridan Aidan Curtin David Fitzgerald Donie Harmon

Pádraig Mawe

Leas Cathaoirleach Keelin Kissane

Frances Purcell

Mary McAuliffe Rita McLoughlin Linda O’Connor Finbarr O’Donoghue

OÍCHE CHIARRAÍ DETAILS Saturday 4th March

The recipients of Kerry Person of the Year 2017 and Laochra Chiarraí 2017 will be formally presented with their awards at our annual flagship event, Oíche Chiarraí, which this year is taking place on Saturday night 4th March in the Ballsbridge Hotel. As ever, we are grateful to our Oíche Chiarraí sponsors, Kerry Group. Those of you who have attended in the past will testify that this is a night not to be missed! Tickets are €65 and can be ordered from any member of the Committee or bookings can be made via paypal directly on our website at www.kerryassociation.ie All tickets must be pre-purchased, there will be no ticket sales on the night. Any cheques should be made payable to the Kerry Association. The event is NOT black-tie. Jason Fallon (who some of you might be familiar with from providing the entertainment after Killarney, Listowel and Punchestown Races) will be providing the entertainment on the night.It promises to be a great night and we hope to see you there!

SINCE OUR LAST NEWSLETTER IN OCTOBER: The Association enjoyed a fantastic Weekend Away in Tralee and Dingle from Friday

7th to Sunday 9th October – “without doubt one of the best ever” was the consensus of the 95 attendees. With Mediterranean-like weather conditions, the Kingdom looked splendid and great craic was had at Páidi Ó Sé’s in Ventry as well as at our host hotel, the Manor West in Tralee. Indeed the Boys of Barr na Sráide could be heard in the hotel as the sun was rising. Huge thanks to chief organiser of the weekend, John F. O’ Sullivan ably assisted by his daughter, Eileen, and our secretary, Mary Shanahan. Photos of the weekend can be viewed at http://www.kerryassociation.ie/away-weekend-79-october-2016/

A huge Kerry crowd attended the launch of Billy Keane’s new book, The Best of Billy Keane, in the Shelbourne Hotel on Wednesday 2nd November. The launch was performed by another Kerryman, Editor-in-Chief of Independent News & Media and Boolteens native, Stephen Rae.

Our Annual Mass for deceased members, family and friends took place on Friday 11th

November, 2016 in the University Church, St Stephen’s Green. Refreshments were served afterwards in the Harcourt Hotel.

A number of Association members attended the launch of “Best Loved Poems”, an anthology of favourite poems from the South of Ireland, edited by Moyvane native, Gabriel Fitzmaurice, and with photography by John Reidy, on Wednesday evening, 23rd November in Hodges Figgis.

Our annual Christmas party was held on Friday 2nd December in the Croke Park Hotel,

Jones’s Road. This year, we had an evening dinner instead of lunch. Over 40 members were in attendance for a very enjoyable evening.

Noel O’Grady’s annual Christmas concert at the Powerscourt Theatre on Sunday

18th December was, as always, a sell-out and enjoyed by a number of members.

On Thursday 12th January the Press Reception for Kerry Person of the Year 2017 and Laochra Chiarraí 2017 was held in the beautiful surroundings of the Department of Foreign Affairs in Iveagh House and our popular winners and lots of members later adjourned to the East Side Tavern on Leeson Street. Thanks to Sheila Prendergast for being our photographer for the evening – all of the photos can be viewed at http://www.kerryassociation.ie/2017-kerry-person-laochra-chiarrai/

On Friday 20th January over 20 members enjoyed a fantastic evening at Smock Alley

Theatre where Dublin-based Killarney actor, Donal Courtney, gave an evocative performance of his one-man-show, "God has no Country" which is a dramatic re-telling of the war time exploits of Kerry monsignor, Hugh O'Flaherty, and how he helped save the lives of 6,500 people in Rome during World War 2. It was particularly special that the Monsignor’s nephew, our patron, Hugh O’Flaherty as well as Hugh’s daughter, Catherine, were in attendance and contributed to the post-show discussion chaired by our own vice-President, Michael O’Regan.

Brosna native Kevin Lane, CEO of Ornua (formerly the Irish Dairy Board) was our guest speaker at our early morning Business Breakfast in the Alexander Hotel in Fenian Street on Thursday 9th February. Nearly 50 members and friends enjoyed a most interesting and enjoyable morning. We are very grateful to Kevin for giving us his time.

COMING UP – INAUGURAL KERRY ASSOCIATION IN DUBLIN ARTS AWARD Wednesday 29th March 2017 Following on from the idea proposed by our president, Christy McCarthy, at last year’s AGM, the Kerry Association decided to establish a new annual award to recognise a Kerry person for their achievement of excellence in the Arts. During 2016 a selection committee, chaired by former Minister for the Arts, Jimmy Deenihan, and comprising both representatives of the Kerry Association committee and representatives from the arts world was established. For his outstanding achievements in literature, the selection committee has chosen Professor Brendan Kennelly as the inaugural recipient of the Kerry Association in Dublin Arts Award. We are delighted to announce that Brendan will be presented with his award by President of Ireland, Michael D. Higgins, at a ceremony in the Shelbourne Hotel on Wednesday evening 29th March at 4.30pm. Kerry Group and the Shelbourne Hotel have kindly agreed to contribute to the sponsorship of the event. As we have to submit the names of all attendees to Áras an Uachtaráin a number of weeks in advance, please register your interest in attending by emailing info@kerryassociation.ie by Friday 3rd March. As the numbers that can attend the ceremony are limited by space constraints, in the event that the numbers registering their interest in attending exceeds the capacity available, we will do a lottery among those who have registered their interest. For that reason, in addition to Brendan’s personal guests, the event will only be open to those who are currently fully paid up members of the Association. We will do our very best to accommodate as many members as possible.

OTHER UPCOMING EVENTS GAA Action As usual there is lots of football and hurling action to look forward to over the next few months. We’ve outlined the February and March National League fixtures as well as the all important visit of Dr. Crokes to Croke Park in the calendar of upcoming events overleaf. Kerry Archaeological and Historical Society Dublin Outing and Lecture: Thomas Ashe 7th March 2017 The Kerry Archaeological and Historical Society’s Dublin Outing and Lecture will take place on Tuesday 7th March focusing on Thomas Ashe. At 2.30pm, a tour of Mountjoy prison museum will be led by Sean Reynolds followed by a memorial mass in honour of Thomas Ashe in the Mater Hospital Chapel at 3.30pm (Homilist: Fr J. Anthony Gaughan, PE, Author and Member). Later that evening, the Thomas Ashe Centenary Memorial lecture will take place in the Teacher's Club, Parnell Square, at 6.30pm. The lecture will be chaired by Joe O'Toole and will feature speakers from the Lusk Historical Society. All are welcome.

Kilmacud Stillorgan Local History Society 9th March 2017 Captain Flora Sandes, descended from the Sandes family of Tarbert, was an adventurous trail-blazer, one of the first women army officers in Europe and a heroic figure of World War One in Serbia. On 9th March, Kilmacud Stillorgan Local History Society present:

An illustrated talk by

Bryan MacMahon Captain Flora Sandes:

“An Irishwoman in the Serbian Army in WW1” in

Glenalbyn (Kilmacud Crokes GAA Club) Stillorgan, Dublin on

Thursday 9 March at 8.00pm Admission: €3.00

www.kilmacudstillorganhistory.ie

February / March Calendar of Upcoming Kerry-related Events:

February March Sunday 26th Kerry vs Monaghan, Allianz Football League 2pm Fitzgerald Stadium, Killarney

**Saturday 4th** **Oíche Chiarraí** Ballsbridge Hotel Dublin 4

Sunday 5th Kerry vs Roscommon, Allianz Football League 2pm Dr. Hyde Park, Roscommon

Sunday 5th Kerry vs Wexford, Allianz Hurling League 2pm Innovate Wexford Park

Tuesday 7th Kerry Archaeological and Historical Society Dublin Outing and Lecture: Thomas Ashe 2.30pm Mountjoy Prison Museum 6.30pm Teachers’ Club, Parnell Square

Thursday 9th Kilmacud Stillorgan Local History Society present a talk by Bryan MacMahon on Captain Flora Sandes 8pm Kilmacud Crokes GAA Club

Sunday 12th Kerry vs Galway, Allianz Hurling League 2pm Austin Stack Park

Friday 17th All Ireland Senior Club Championship Final Dr. Crokes vs Slaughtneil Croke Park

Saturday 18th Kerry vs Dublin, Allianz Football League 7pm Austin Stack Park

Sunday 26th Kerry vs Cavan, Allianz Football League 2pm Kingspan Breffni Park, Cavan

Sunday 26th Kerry vs Offaly, Allianz Hurling League 3pm Austin Stack Park

** Wednesday 29th** Presentation of Inaugural Kerry Association in Dublin Arts Award 4.30pm Shelbourne Hotel, Dublin 2

OTHER NEWS / NOTICES All-Ireland Junior Club Champions Congratulations to Glenbeigh-Glencar on becoming All Ireland Junior Club Champions having overcome Rock St Patrick’s of Tyrone in Croke Park on Sunday last. Another day, another All-Ireland coming back to Kerry!

Celebrating Darran O’Sullivan’s goal in the Junior Club Championship final on Sunday – Photo Credit: RTE.ie From Laois to Kerry Some members might be interested in the book “From Laois to Kerry” self-published by Michael Christopher Keane, a retired UCC lecturer originally hailing from Tarbert. The first part of the book deals with 'The Laois origins and continuing presence in Kerry of the Moores, Kellys, Dowlings, Lawlors, Dorans, Dees and McEvoys’ while the second deals with 'The remarkable lives of their Transplanter and Landlord Patrick Crosbie and his successor Sir Pierce Crosbie'. The author's contact details are phone nos. 021-7331406, 087-2704586 and email address: mjagkeane@gmail.com Cost including postage and packaging is listed at €20.

OTHER NEWS / NOTICES (continued) Walk of the Ancestors – Friday 21st to Sunday 23rd April This is a historical event taking place in South Kerry in April to commemorate 150 years since the Fenian Rising. It’s a non-political event along the lines of the Gathering. The Australian ambassador will be present and a number of lectures and cultural events will take place. Details of the draft itinerary for the weekend are set out at Appendix 1. John Egan Golf Classic –17th May – Save the Date A golf classic in memory of the late John Egan, former great of Kerry football, will take place in Hollystown Golf Course on Wednesday 17th May next. This golf classic will give an opportunity to Kerry people and friends in the Dublin area to be associated with the ongoing plan to unveil a memorial to John in his hometown of Sneem in June of this year. John was widely regarded as one of the greatest Gaelic Football forwards of all time and his six All-Ireland medals and five All-Stars bear testimony to that status. John spent all his working career in Cork as a member of An Garda Síochána where he was extremely popular. His unexpected death came as a huge shock to those who knew and admired him. Former Cork players – opponents as footballers, but good friends - have been prominent in raising funds towards the memorial project which indeed is a great tribute to the late Kerry star. Further details of the Golf Classic will be included in our next newsletter.

Dancing with the Stars!

Continued success to Aidan O’Mahony, who has swapped his football boots for dancing shoes and is strutting his stuff every Sunday evening on RTE’s Dancing with the Stars!

Irish Haemochromatosis Association Ballybunion native, Margaret Mullett, has been Chairperson of the Irish Haemochromatosis Association since 2002. Hereditary Haemochromatosis (HH) is the name given to a genetic disorder where the body absorbs too much iron from the diet and it has a particular relevance for Irish people as we have the highest rate of sufferers in the world. While awareness of the condition has grown in recent years, many Irish people are still unaware of it or know little about the consequences of not being tested or treated for it. The Irish Heamochromatosis Association (http://www.haemochromatosis-ir.com/) aims to inform as many people as possible about the disorder. Margaret is passionate about alerting people to the possibility that they may have too much iron in their blood and thus be at risk of serious organ damage and even death as was sadly the case for her late husband, Dr. George Mullet, who died six weeks following diagnosis of HH. Margaret is determined to raise awareness of the crucial importance of early diagnosis because for those diagnosed in time, there is a safe and effective therapy available. Margaret has requested the inclusion of some information on HH in our newsletter so that our members are aware of the signs and symptoms and can take appropriate action, if necessary. We are pleased to include this information as an Appendix 2 to this newsletter. Below is a photo of Margaret receiving an honorary doctorate from the National University of Ireland on 1st December last in recognition of her services to health in Ireland through advocacy of early diagnosis and care of patients suffering from Hereditary Haemochromatosis.

Annual Membership falls due in April each year. If you have already paid we would like to say "thank you". If you have forgotten, you can pay online at www.kerryassociation.ie or send the subscription fee of €20.00 to the address below. Most people have now forwarded up to date details for our Database. We would be pleased to receive any additional information from you on this form, which of course is strictly confidential and for use of the Kerry Association only.

Name: ________________________________ Address: ________________________________ ________________________________ Phone/: __________ / __________

Email: ________________________________ Kerry Birthplace: ________________________________

Company Name: ________________________________ Company Address: ________________________________ ________________________________

Phone: __________ / __________

Email: ________________________________ Website Address: ________________________________

Do you know other interested people? Do you know any friends, relations or work colleagues who would like to join the Kerry Association for fun outings, cultural or social activities? If so, please complete the following and we will forward details to them:

Name: ________________________________ Address: ________________________________ ________________________________ Phone: __________ / __________

Please send the completed forms and €20.00 to the Secretary of the Association, Mary Shanahan, 12 Belvedere Place, Dublin 1, (087) 9262789.

Membership Form

IRD Foilmore Kells CLGCommunity Resource Centre

Old Railway StationKells

t.1k. °F tb6 CahersiveenCo. Kerry

21 — 23 Cpit 2017 Telephone: 066 — 9477766Email: kellsstation@gmail.com

Friday, 21 April 2017

6pm Dinner for those travelling/arriving in Caitins Pub, Kells

8pm Meet and Greet. Official Opening of the Walk of the Ancestors” Weekend inCaitins

Lecture Dr. Shane Lordan UCD: Topic TBA

Lecture Anne Golden: “.Jolm Golden-South Kerry Fenian: Hisinvolvement in the rising and his transportation to Fremantle,Western Australia”

Lecture Chris Robinson: “The life of John Golden after receiving hisfree Pardon”

I Opm Music and Dance

Saturday, 22 April 2017

lOam -1pm Meeting Point at The Quarry Restaurant, Kells

Lecture John O’Donoghue. former Ceairn Cornhairle of Dáil Eireann:Topic TBA

Unveiling of Plaque

Walk & Drama “Walk of the Ancestors”: Walk the route where “KellsStation was taken by the Boys of Filemore”

1pm Soup and sandwiches at The Qciarry Restaurant, Kells

2pm Lecture Pádraig O ConcLlbhair author of ‘The Fenians were DreadfulMen: The 1867 Rising’

7pm Dinner in Caitins

9pm Music and Dance

Appendix 1

Sunday, 23 April 2017

lOam

11am

Mass for tile Deceased members of tile Golden Family Worldwide: FilemoreChurch

TealCoffee at The Quarry Restaurant, Kelis

11:30-1:30 Lecture John Sheehan, UCC: A talk on the historical and archaeoiogicaiaspects of the Kells (e.g. Dning Hill, Butter Route, Caherliiihan, PilgrimPath). Walk the Golden Mile and discussion outdoor (weather permitting)

1:30 Lunch (Numbers booked in advance)

FRINGE EVENTS

• Song workshop based on the legacy of the 1867 Fenian Rising

• National Schools Essay/Poetry Competition

• Awaiting confirmation on which event(s) the Australian ambassadtr.

An Rcnn Ccttce S6ta!a

www.welfarQie

epobdThe Community Seriftea Programme

is a Pobal managed programme

I•.

Supported by the Department of Social Protedianunder 11w Community Services Programme

What is Hereditary Haemochromatosis?

Hereditary Haemochromatosis (HH) is a common inherited disorder where the body absorbs too much iron from the diet. The iron is then deposited in, and can ultimately damage, organs such as the liver, heart and pancreas. When a person has too much iron in their body they are said to have 'iron overload'.

The treatment of HH involves the removal of some blood at regular intervals and is called therapeutic phlebotomy; it uses the same procedure as that of a normal blood donation. When this is done the body’s response is to make extra blood, using up some of the stored iron.

Early diagnosis and treatment of HH prevents complications and results in a normal life expectancy.

Ireland has the highest levels of this condition in the world. Research has shown that approximately 1 in 83 people are predisposed to develop HH.

Why do our bodies need iron?

Iron, in small amounts, is essential for the production of red blood cells which carry oxygen around the body. Our bodies have no method of getting rid of excess iron, so levels are controlled by not absorbing more iron than is needed. A person with HH absorbs a great deal more iron than is necessary.

The Signs and Symptoms

No two people are alike and symptoms will vary from person to person. Generally symptoms appear when iron levels increase but some people can have high levels of iron with no symptoms. Symptoms tend to occur after the age of 40, but may be earlier or later.

The most common symptoms include: » Fatigue, general weakness and lethargy » Joint pain. Knuckle and first joint of the first two

fingers are commonly affected » Abdominal (tummy) pain » Sexual dysfunction / Loss of libido » Discoloration or bronzing of skin » Mood swings and irritability

Symptoms of higher levels of iron in certain organs: » Liver: Pain in liver, enlarged liver, fatigue,

jaundice (yellowness of skin) » Heart: Irregular heartbeat, shortness of breath,

swollen ankles » Pancreas: iron overload causes diabetes

resulting in thirst, increased need to urinate

Most individuals who have HH will develop at least one or two of the above symptoms.

There are a number of other reasons apart from HH that can lead to increased iron levels. These include hepatitis B, hepatitis C, excessive alcohol consumption and fatty liver disease.

Hereditary Haemochromatosis

For Patients

Appendix 2

Tests Involved: Iron Studies

This consists of a simple blood test to check your iron levels. It is ideally taken after an overnight fast. Both ‘serum ferritin’ and ‘transferrin saturation’ are measured.

Serum Ferritin (SF)This is an iron storage protein. A raised result may be due to iron overload but there are other causes (such as when you are ill) that can give a high result. Therefore, the result is interpreted in combination with transferrin saturation.

A SF of > 200 µg/L in women and > 300 µg/L in men suggests iron overload. If your SF is >1000 µg/L then you will be referred onto a specialist to check your liver for damage. They may perform a liver biopsy test or fibroscan. Transferrin SaturationThis is a protein that carries iron from the gut around the body. A transferrin saturation result above >45% is strongly suggestive of HH and should prompt a genetic test.

Diagnosis and the Tests Involved

Your GP will perform the necessary tests for diagnosing Hereditary Haemochromatosis.

The Genetics of HH

Each person has about 20,000 - 25,000 genes. Genes control different characteristics such as eye colour and height. HH is caused by defects (mutations) in a gene called the HFE gene. HFE has many purposes, but one important role is that it helps to control the amount of iron that is absorbed from food. There are several known mutations in the HFE gene. The C282Y mutation is known to cause HH. It is still debated whether other HFE mutations, such as H63D, causes HH and there is still no established consensus.

Everyone inherits two copies of HFE, one from their father and one from their mother. » When a person has one mutated copy, he or

she is called a carrier or heterozygote » When a person has two of the same mutated

copies, he or she is called a homozygote e.g. C282Y homozygote

» When a person has two different – but mutated – copies, he or she is called a compound heterozygote e.g. C282Y/H63D compound heterozygote.

HH is a recessive disease, this means that it only develops if you receive two mutated copies of the gene, one from your mother and one from your father.

Diagnosis of Hereditary Haemochromatosis is made

only when you have both copies of the mutated gene

(C282Y) and have high levels of iron in your body.

Who should be tested for HH?

» If you have the above mentioned symptoms » If you have family members with HH. If your

brother, sister, child, parent or grandparent has HH then you are at increased risk of having the same condition.

» If a relative died from liver disease (but did not have Hepatitis B/C and did not drink alcohol), liver cancer at a young age (under 60 years old), heart failure where the cause of heart failure was not known, ‘bronze diabetes’ (pigmented skin and diabetes).

Your GP can order blood tests to check your iron levels. If there is a reason to suspect HH you can be tested for the genes by another blood test.

Tests Involved: Genetic TestingGenetic testing is only performed when you have raised Transferrin Saturation. It will test for the C282Y mutation, and in some labs, will also test for the H63D mutation. Testing of patients under the age of 18 is not recommended as it is an adult onset disease. The procedure involves a blood test.

Inheritance of HaemochromatosisEach person has 2 copies of the HFE gene, one copy inherited from their mother and one from their father. Each copy will either be normal (n) or have the C282Y mutation (H). Therefore each person has 3 possible combinations for their HFE gene. The examples shown are averages for the whole population. However, in any particular family where both parents are carriers, it is possible for all children to be affected, all to be carriers, or all to be normal.

HH HHHH HHHHHH

Homozygous for C282Y

100% chance Homozygous for C282Y

Homozygous for C282Y

1. 2.

HH HnHH Hn HH Hn

Homozygous for C282Y

50% chance - Homozygous 50% Chance - Heterozygous carrier

Heterozygous Carrier

Hn HnHH Hn nH nn

Heterozygous Carrier

25% chance - Homozygous 50% Chance - Carrier25% chance - Normal

Heterozygous Carrier

3.

HH nnHn Hn Hn Hn

100% chance carriers

4.

Genotype(Prevalence in

Population) Interpretation of result and risk of developing Iron Overload

Homozygous C282Y

(1 in 83)

Diagnosis of Hereditary Haemochromatosis is made in the presence of iron overload.

Are at risk of developing HH (i.e. not everyone with this genotype will develop HH), therefore are at risk of developing significant iron overload.

Compound Heterozygous C282Y/H63D

(1 in 60)

Excludes the diagnosis of the most common form of Hereditary Haemochromatosis.

May be at-risk of developing mild to moderate iron overload in association with other factors (e.g. alcohol consumption) and may be considered for treatment via phlebotomy.

Heterozygous C282Y

(1 in 5)

At no increased risk of developing Hereditary Haemochromatosis associated iron overload. Is a carrier of Hereditary Haemochromatosis.

If iron overloaded, other causes of iron overload should be considered.

Heterozygous H63D At no increased risk of developing HH associated iron overload.

If iron overloaded, other causes of iron overload should be considered.

Homozygous H63D At no increased risk of developing HH associated iron overload.

If iron overloaded, other causes of iron overload should be considered.

Normal Genotype At no increased risk of developing HH associated iron overload.

If iron overloaded, other causes of iron overload should be considered.

Genetics can be very difficult to understand at first. What is most important is that you know which gene combination causes the greatest known risk of loading iron. See the table below for information.

Normal Genotype

Homozygous for C282Y

Management

Treatment

Treatment of HH aims to restore iron levels to a safe level. Having safe iron levels reduces the symptoms of iron overload and can help avoid complications.

Therapeutic phlebotomy, or removal of approximately 500ml of blood via a needle into the arm (same method as blood donation) is the main treatment for HH.

Phlebotomy treatment should begin when your Serum Ferritin is above the normal range (this is typically >200 µg/L in pre-menopausal women and >300 µg/L in men and post-menopausal women.)

Where to get Treatment

Your GP will explain where you can get therapeutic phlebotomy in your area. It can be performed by your GP or you may be referred onto another clinic to get the procedure done. Most clinics are currently based in the hospital but there are aims to move these to the community in the future.

The Irish Blood Transfusion Service (IBTS) has a therapeutic phlebotomy programme for individuals with HH and you can be referred onto the IBTS if you meet their referral criteria. This includes having your Serum Ferritin < 600 µg/L. The service is currently available in Dublin and Cork and it is hoped to expand this service nationally. Please see https://www.giveblood.ie/ for more details. It is important that when you attend the IBTS for phlebotomy you answer the questions honestly in order to ensure your safety and the safety of patients who may receive your blood.

A standard 500ml phlebotomy removes 0.25 gram of iron from the body.

Four phlebotomies remove approximately 1 gram of iron. The amount of phlebotomies you need is dependent on the amount of iron stored (ferritin) in your body.

E.g. A person with moderate iron overload may have between 4-10 grams of excess iron which will take between 16 – 40 phlebotomies to reduce to normal iron levels.

Treatment Involves Two Stages

1) Iron Unloading Stage: This involves weekly phlebotomies until your stored iron levels are in the normal range. The aim is to have your ‘Serum Ferritin’ around 50-100 µg/L. It may take many months or even years to unload excess iron.

2) Life-long Maintenance Phase: You need to maintain your Serum Ferritin at 50-100 µg/L. Therefore, your iron levels will need to be monitored usually every 3 months, at least every 12 months. You may require 3-4 phlebotomies per year to ensure your iron levels are at a safe level to keep you healthy.

Treatment for HH is ongoing for life. It is important you go for regular check-ups with your GP.

Hereditary Haemochromatosis

is not a blood disease. The blood can be

safely used by the Irish Blood Transfusion Service

providing you have no other contraindications to being

a blood donor and you meet the referral

criteria.

Other Tests

If your SF is elevated, you may have other tests including fasting blood glucose, HbA1c and liver tests (ALT and AST). Other tests will be ordered according to your symptoms. These tests will be explained to you by your health care provider.

Staying Healthy During Treatment

During treatment, the number of red blood cells in your blood will also be checked. This is measured by Haemoglobin (Hb). You need to have a normal Hb before phlebotomy. Having a low Hb is called anaemia.

The frequency of your phlebotomy treatments may need to be slowed down if:• Your Hb is too low because your body hasn’t

replaced your red blood cells just yet • Your SF is too low because you are no longer

overloaded • Your blood pressure is too low.

Phlebotomy treatment will allow iron to be removed and iron stores will return to normal. However, it will not cure any clinical condition such as diabetes already present at the time treatment is started. Therefore, early diagnosis and treatment is vital.

What if I have the genetic mutations but do not have iron overload?

C282Y homozygotes and C282Y/H63D compound heterozygotes should arrange with your GP to monitor your iron levels every 12 months. You need to take no other action if they remain in the normal range.

Family Screening

If you have been diagnosed with HH it is very important that your siblings and offspring are screened for the condition. Your parents may need to be screened following an assessment by the GP on their age, sex and ferritin. If you are worried about your children, it is useful to perform genetic testing on your spouse to predict whether the children will need to be considered for genetic testing.

Diet and Lifestyle

You should eat a balanced, nutritious diet. Avoidance of dietary iron (such as red meat) has little benefit as considerably more iron can be removed in a single phlebotomy and could compromise your intake of other important nutrients. The following is advised:

» Any alcohol consumed can increase liver problems and increase iron absorption. Limit your alcohol intake to safe drinking levels. Low

risk weekly alcohol guidelines for adults are: » up to 11 standard drinks in a week for

women, and » up to 17 standard drinks in a week for

men. The standard drink in Ireland is 10 grams of pure alcohol which is equivalent to a pub measure of spirits (35.5ml), 175 ml of wine (12.5% volume) or a half pint of normal beer. Please note, it has been advised that the Irish Government lower these limits following reduction of UK limits in 2016.

If your liver is damaged you should avoid alcohol.

» Eat a well-balanced diet and drink plenty of water.

» Avoid iron supplements (including multivitamins and medication containing iron).

» There is no need for a patients undergoing phlebotomy to start a low-iron diet as the amount of iron removed by phlebotomy is far greater than that present in even a high-iron diet. If you do not regularly attend your appointments, restricting consumption of organ meats (such as liver) may be warranted, as these are quite high in iron

» If you are iron overloaded you should avoid raw shellfish because of the risk of vibrio vulnificus (bacterial food poisoning)

» If you are having lots of phlebotomies extra vitamin B12 and folate, either in your diet or taken as a supplement, can be very helpful. Oral supplements for vitamin B12 (5 µg daily) and folate (500 µg daily) can be taken.

» Vitamin C can increase absorption of dietary iron at meal times so should be avoided around meal times.

HH cannot be treated by diet.

It is thought that the

haemochromatosis gene originated around 40,000

years ago in Ireland in response to famine. It was spread by Vikings 'visiting'

other countries.

Tips Before and After Your Phlebotomy

Phlebotomy can be hard on the body especially when you have them at high frequency. You may feel tired after treatment. It is important to look after yourself during treatment.

Before your phlebotomy, it is advised you have a balanced, nutritious meal and drink plenty of water. Drinking water helps in better flow of blood during the procedure. You should continue to drink extra fluids for 24hours after your phlebotomy.

The procedure may be uncomfortable, but it is a simple and safe procedure which is very important for your health.

The procedure itself takes about 5-10 minutes. You will need to rest immediately after treatment for at least 15 minutes. You should avoid heavy physical activity for 24 hours after the phlebotomy.

Useful Information

This leaflet was produced following development of the Model of Care for Hereditary Haemochromatosis and Model of Care for Therapeutic Phlebotomy. Please see the HSE A-Z webpage for more details: https://www.hse.ie/eng/health/az/H/Haemochromatosis/

For more information about HH please visit the following:

Irish Haemochromatosis Associationhttp://www.haemochromatosis-ir.com/

The UK Haemochromatosis Society http://haemochromatosis.org.uk/support/handbook/

Haemochromatosis Australia http://haemochromatosis.org.au/

...chronic fatigue...joint pain...diabetes...irregular heartbeat