Newsletter revamp oct 07
Information Magazine for people with Hepatitis C and HIVThe Irish Haemophilia Society
Representing people in Ireland with haemophilia and related bleeding disorders. It is now nine months since the first person with haemophilia received treatment withthe new triple combination therapy, fol- lowing their authorisation by the Minister forHealth. Prior to that, one individual had beentreated using combination therapy with oneof the new drugs (Victrelis) in combinationwith Pegylated Interferon and Ribavirin on anearly access programme. We are happy toreport that that this individual has successful-ly completed his treatment and has clearedthe hepatitis C virus. Since July a further ten people withhaemophilia have commenced treatment. Ofthose ten, two have completed 24 weeks oftreatment, and are awaiting the long termoutcome of their treatment. A further five arecurrently undergoing a 48 week course oftreatment, and three individuals stopped treatment. Of those who stopped, two individuals stopped treatmentbecause their viral load for hepatitis C was not hitting the targets set, and unfortunately one individual died whileon treatment, although his death may wel have been due to an unrelated cause.
The number of people with haemophilia who have been treated to date is relatively smal , and it is difficult andindeed would be unhelpful to draw too many conclusions from the results to date. Results wil vary dependingon the individual's previous treatment history, state of their liver, and also their genetic composition for IL28Bwhich can help as one of the predictors of treatment outcome. Treatment Outcome
The Society has been working closely with many of the individuals on treatment and giving them as much help
and support as we can. What has become clear to us from speaking to individuals on treatment, are the impor-
tance of a number of points as fol ows:
• Preparation for treatment is vital Before starting treatment, each individual should be aware of the potential side effects and have information on the dietary requirements, if they are being treated with Incivo.
Preparation also includes thinking careful y about when you wil start treatment in relation to your family com- mitments, work commitments, col ege commitments and al other aspects of your life. Depending on your clini- cal picture, progression of your liver disease, and your previous treatment history, your Hepatologist and the Edition: March 2013
the Clinical Nurse Specialist in Hepatology wil be able our members to date, that talking to each other or to advise you in relation to the possible duration of talking to the Society has been very beneficial and treatment you wil require. In some cases, (for example where there is cirrhosis or previously failed treatment)then clearly 48 weeks treatment wil be required. In • Support from the I.H.S.
other cases, the decision as to whether an individual Please remember that there is also financial and logis- wil require 24 weeks or 48 weeks of treatment wil tical support available from the Society. For any mem- not become apparent until at least four weeks of treat- ber who is on treatment and who resides at least one ment has been completed. Therefore, in these situa- and a half hours outside Dublin, who has to travel reg- tions it is better for individuals to prepare for a course ularly to Dublin for treatment, the Society make finan- of 48 weeks treatment. If the treatment includes Incivo cial help available towards the travel costs. then each dose of treatment for the first twelve weekshas to be taken with food which contains at least 20gof fat. Feedback from our members who are on treat-ment and also from the team in Hepatology, stress theimportance of taking at least this 20g of fat with theIncivo three times per day. This ensures that the med-ication is properly absorbed and may prevent someunhelpful side effects. Further detailed information ondietary options to help you comply with this require-ment are on pages 3, 4, 5 & 6 of this supplement.
• Work /Col egeIn terms of work or col ege our advice would be tolighten your schedule as much as possible, certainly forthe first 12 weeks of treatment, and arrange to take In addition, if you are on treatment and you require time off if possible. accommodation near St. James's Hospital, when youare visiting the centre, or if you are being keptovernight, then the Society has an apartment availableadjacent to St. James's Hospital, which you can use.
In March, the first people with haemophilia who areco-infected with hepatitis C and HIV have begun treat-ment, and of course the requirements to deal with HIVmedications in addition to hepatitis C medications wiladd an extra layer of complexity to their treatment.
In May, the Society wil organise our annual conferencefor members with hepatitis C and/or HIV and theirpartners. If you are on treatment or contemplatingtreatment I would strongly urge you to attend this year It is probably easier to cope if you arrange to lighten to get up to date information on the current treat- your schedule, and then add more work/study in, if you ments and future treatments in the pipeline.
are not suffering from side effects, than to assume thatyou wil not suffer from side effects and then be unable to cope with your normal schedule.
• FamilyIt is vital y important to involve your spouse/partneror family member in relation to discussions on treat- ment, so that they wil be ful y involved and aware of the potential side effects. Peer support is very impor- tant. If you are starting treatment please do contactthe Irish Haemophilia Society and we wil give you as much help and support as possible. We are in contact on a personal basis with the majority of members on treatment and it has certainly been the experience of Dietary Options While on Treatment
2 Scrambled eggs (15g fat) and 2 slices of wholemeal toast & butter spread (5.8g fat) =
Total = 20.8g fat
1 Scrambled egg/Omelette with onion, peppers, tomatoes and mushroom (13.25g fat) and
slice of wholemeal bread & butter spread (2.9g fat) plus cup of tea with two tablespoons of
milk (1.15g fat) = Total = 17.3g fat
1 cup of unsweetened muesli (4.42g fat) with 125ml whole milk (4.88g fat) and an al bran
muffin (8g fat) = Total = 17.3g fat
2 scrambled eggs (15g fat) and 1 gril ed rasher (4.73g fat) = Total = 19.72g fat
luNCH IDeaS
Salmon and green bean salad {green beans, onion, garlic, Italian dressing, lettuce & tomatoes
(16.4g fat)}, one wholemeal crusty rol (1.4g fat) and a glass of whole milk (2.3g fat) =
Total = 20.1g fat
2 slices of wholegrain bread and mayonnaise spread (6.89g fat) with 1 medium slice of gril ed
chicken (3.82g fat) with 20g piece of cheddar cheese (6.89g fat) and a gril ed tomato (0.59g
fat). A strawberry, banana and yoghurt smoothie (1.2g fat) = total fat content =
Total = 19.39g fat
Stuffed gril ed chicken {peppers, feta cheese and olives (5.9g fat)} with smal portion of
savoury rice (9.71g fat) with glass of whole milk (2.3g fat) = Total = 17.91g fat
DINNer IDeaS
Shepherds pie (with ground beef, cream potatoes, cheddar cheese, peas, carrots) =
Total = 17.6g fat
1 serving of homemade beef lasagne = Total = 17g fat
Stir fried chicken with broccoli, peanuts and rice = Total = 20g fat
Beef stew (with carrots, potatoes, peas, beef stock) = Total = 20g fat
Spaghetti Carbonara = Total = 21g fat
SNaCk IDeaS
1 whole avocado and French dressing = Total = 19g fat
6 – 8 brazil nuts = Total 19g fat
14 halves walnuts = Total = 18g fat
24 almonds (14g fat) and a Danone natural yoghurt (3.8g fat) = Total = 17.8g fat
5 crackers and 1oz of cheese (13.5g fat) and a Danone natural yoghurt (3.8g fat) =
Total = 17.3g fat
(Al snacks/meals taken with a glass of whole milk (2.3g fat) or tea/coffee with whole milk(1.15g fat) add up to 20g fat.) NOTeS ON DIeT fOr TrIPle THeraPy requIrINg 20g Of faT
20g of fat
170g Salmon Fil et
2 Slices of ful fat cheese
1 Avocado (21g fat)
4 Tbsps of Oil
3 Tbsps of peanut butter
2 Tbsps of Butter
10g – 19g Fat
2 Scrambled eggs (14g fat)
10 Hazelnuts (18g fat) 5g – 9g fat
3 Slices of bacon (9g fat) 1g – 4g fat
2 slices of bread (2g fat) www.caloriecount.com – website can be used to quantify any foods fat content. There is also an app available for download.
estimated fat Content
fat content (per 100g)
per portion (g)
Bowl of cornflakes (dry) Porridge made with milk Al bran/Shredded Wheat (dry)Weetabix (2 Biscuits) (dry) Crunchy Nut Cornflakes (dry) 1.5Fruit & Fibre (dry) Tesco Finest Butter Croissant 20Regular Croissant Bagel with 40g cream Cheese 102 slices toast with butter & peanut butterDenny's Sausages (x2) Clonakilty sausages Tesco Finest Toulouse Sausages (x2)TF Garlic & Basil Sausages (x2)2 Scrambled eggs Denny Hickory Rasher (x2) Galtee Rasher (x2) estimated fat Content
fat content (per 100g)
per portion (g)
4pm & 11pm ideas
Chocolate
Snickers Bar
Cadbury's Fruit & Nut Yorkie Nut & Raisin Terry Chocolate Orange Fun size Mars Bar Ice-Cream
Ben & Jerry's Choc Fudge
BrownieB & J Dough Double WhammyB & J Caramel Chew Haagen Das Chocolate & PralineHD Vanil a Nestle Lion Bar Ice Cream barMagnum Classic bar Magnum Almond bar Cake
Glenilen Lemon Posset
Glenilen Irish Cream Liquer Tesco S'berry Jam Slice Tesco Iced Custard Slice Tesco S'berry Jam Scone Tesco S'berry Jam Doughnut Tesco Belgian Choc Choux estimated fat Content
fat content (per 100g)
per portion (g)
Cadbury Hot Choc Pudding TF Butterscotch Mousse Mr Kipling Golden Syrup puddingMr Kipling Lemon pudding Tesco Bramley Apple cake TF Toffee Pecan Roulade Kelkin Butter Popcorn Pies etc.
Bird's Eye Chicken Pie
Galway Chicken, Mushroom, 27Bacon pieDenny Chicken & Mushroom 25.7sliceDenny Cornish Pasties Denny Jumbo Sausage Rol Tesco Pizza Slice Tesco Southern Fried Chicken fil et (3)Domino Pizza (1 slice) McDonald's Big Mac McD's Cheeseburger McD's Quarter Pounder McD's Quarter Pounder with cheese6 Chicken Nuggets McChicken Sandwich Regular French Fries Burger King Whopper Burger King Hamburger Burger King Cheeseburger between 11 and 16 Bag of Hula Hoops Roasted peanuts 30g If your treatment includes Incivo, then each dose of
treatment for the first twelve weeks has to be
taken with food which contains at least 20g of fat.
feedback from members who are currently on
treatment, and also from the team at Hepatology,
stress the importance of taking this. This ensures
that the medication is properly absorbed and may
prevent some unhelpful side effects.
estimated fat Content
fat content (per 100g)
per portion (g)
Cashel/Danish Blue OTHer
100g black olives
Chicken Liver Pate (average) Houmous (average) CreaM eTC
Clotted cream
DINNer OPTIONS
Shepard's pie (not with lean mince – added butter to the mash topping)
Spaghetti Carbonara (generous parmesan)
Spaghetti Bolognese (as above)
Chicken kiev and chips/wedges
lasagne
Bacon & Cabbage (using ful fat milk and butter to make the parsley sauce)
Pan fried salmon and mash (with a side salad and olive oil)
fried or grilled hamburger, topped with cheese or bacon
quiche lorraine with coleslaw and brown bread
Pizza and garlic bread
good size pork chop (including rind) and mash with butter with 200ml of ful fat milk
goat's cheese, onion tart
Curries (mild) – home made with coconut milk or from a jar with Naan bread
fish fingers or Donegal Catch with chips or wedges
Stir fry with cashew or peanuts – generous on the oil
Beef stew (using stewing steak, not lean beef) slow cooked and served with buttery mash
fish pie with salmon and mussels – served with mash and white sauce
any variation on a cheese omelette – even better with added bacon
roasted goat's cheese stuffed chicken breast (If goat's cheese is too strong for some tastes,
try Boursin garlic cheese)
Add a splash of ful fat milk, a chunk of butter and even cheese to al mashed potato as this would add 4-6 g of fat to an individual portion. Supports available from the Society
If there is anything that the Society can help you with, please do not hesitate to contact the office on 01 6579900.
We are committed to offering practical support and assistance to members on hepatitis C treatment. We are hereto help and to listen. Some of the supports available are in the fol owing areas: The Society has purchased an apartment consistingof a two bedroom apartment and a separate onebedroom apartment. These apartments are locatedin Hyde Square some 200 metres from St. James'sHospital or less than 5 minutes walk fromHepatology or the National Centre for HereditaryCoagulation Disorders. The apartments are availableto persons with haemophilia when they are attend-ing at St. James's Hospital for treatment or for areview appointment, when the member is travel ingfrom outside of Dublin. The facility should be partic-ularly useful in circumstances such as: Travel ing up from the country to make an early appointment.
Attending appointments on consecutive days.
Accommodation can be availed of by the person with haemophilia along with their spouse/partner/accompanyingperson or family members. A nominal fee of €10.00 per booking per night wil be levied to offset the cost of clean-ing and routine maintenance. If you would like to book the apartment please contact Anne Duffy on 01 6579900 / 087 232 0255. If Anne is notavailable please speak to Debbie Greene or if Debbie is not available any member of staff wil be able to deal withyour query / booking. When you make a booking to stay in the apartment we wil arrange to meet with you tohandover keys and to show you around if it is your first time to stay there. There is one car parking space avail-able so on any given night there wil be a space available on a first come first serve basis. We are aware that during the course of treatment some members wil suffer a financial burden due to the addi-tional cost of having to travel long distances to Dublin on a regular basis to have their treatment monitored andreviewed. The Society wil provide a payment of €30.00 per visit to each person with haemophilia who is attend-ing the Hepatology centre in St. James's or Cork University Hospital for treatment when that person lives morethan 1.5 hours drive from the treatment centre they attend. We would ask that if you attend the Hepatology centre in St. James's or at Cork University Hospital, that you askthem for a standard letter stating that you attended on that day. If you then send this into the Society on a month- ly basis we wil then refund you €30.00 per visit.
Please contact Anne Duffy on 087 232 0255 or any of the Society staff with any concerns or queries you have in relation to treatment. We are there to give you as much support as possible during your course of treatment.
IrISH HaeMOPHIlIa SOCIeTy
Conference for members living with
Hepatitis C and/or HIV
Dates: friday 10th to Sunday 12th May, 2013
Venue: Pembroke Hotel, kilkenny
We are pleased to announce details of a weekend conference for members living with HepatitisC and / or HIV. The conference wil take place over the weekend of 10th to 12th May in thePembroke Hotel in Kilkenny. The cost for the weekend wil be subsidised by the Society at €50per person. This wil include attendance at the conference, two nights accommodation withbreakfast and lunch on Saturday and on Sunday, a buffet dinner on Friday evening and dinner onSaturday evening. If you and your partner/spouse would like to attend, please return theattached booking form by Friday 19th April 2013.
PRELIMINARY PROGRAMME friday 10th May
18.00 – 19.00
Preliminary results of survey: A discussion over a buffet dinner Saturday 11th May
10.00 – 11.30
Hepatitis C – Current treatments and future prospectsProfessor Suzanne Norris, St James's Hospital Tea / Coffee Break A review of Hepatitis C treatment - Results to dateHepatology Nurses, St James's Hospital An update on treatment for Hepatitis C for co–infected personsProfessor Colm Bergin, St James's Hospital Tea / Coffee Break Treatment Experiences – A facilitated discussion where you wil hear fromthe experiences of people with haemophilia on treatmentNurse Counsel or Anne Duffy and Psychologist Sarah Jamieson Sunday 12th May
10.00 – 12.00
For people with haemophilia: A discussion on 4 topics Making treatment decisions Preparing for treatment Coping with treatment The treatment did not work, what next? Nurse Counsel or Anne Duffy or Psychologist Sarah Jamieson
OR
A discussion for spouses / partnersNurse Counsel or Anne Duffy or Psychologist Sarah Jamieson A ful group discussion Nurse Counsel or Anne Duffy and Psychologist Sarah Jamieson If you would like to attend this conference, please contact the office on 01 6579900.
Irish Haemophilia Society, First Floor, Cathedral Court, New Street, Dublin 8.
Source: http://haemophilia.weareopen.ie/wp-content/uploads/2015/08/Positive-News-March-2013-Final-draft.pdf
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