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"Help one another; there's no time like the present and no present like the time". ~James Durst
Sarnelli House is located just outside Nong Khai in NE Thailand and is home to over 150 children. Almost half of them are HIV positive, others are orphaned by AIDS, some come from impoverished families who are unable to take care of them, while a growing number are victims of abuse and ne-glect. I’ve been living at Sarnelli House orphanage for over six weeks now and I’m enjoying it very much. This is my sixth trip here and I will stay for three months this visit.
The orphanage was established in 1999 by a US Redemptorist priest called Fr. Mike Shea. He had been working in the area for over thirty years and had seen first hand the consequences of AIDS on the local poor villages. Fr. Shea tended to the dying as best he could but a new emergency soon developed, what would become of the orphaned children, many of whom had been born infected with the disease. So, he begged and borrowed to build the first of what are now seven houses for over 150 kids. Back then, the priority was keeping the children alive, a sadly losing battle for the first few years until the emergence of anti-retroviral (ARV) drugs. More and more children arrived, some of whom didn’t have HIV but were seen as dangerous by relatives or neighbours as they were the offspring of infected parents. These days, all of the children with HIV receive ARVs and attend a hospital two hours away for regular check ups. The drugs are free and the medical care is good. The children are happy, vibrant, energetic and loving.
I first became involved in 2008 when I began to sponsor a child, a then 14 year old girl called Fa. Fa turned 20 last year and graduated from High School in March. Education is now one of the main priorities for these kids. Some of them missed important years at school, others have been affected by AIDS related Cerebral Meningitis and some are developmentally challenged and, consequently, unwanted by their families, but almost all of the children attend local schools and there are quite a few who are very bright. They don’t have parents to sit with them as they do their homework and the education system here isn’t very good, but Fa, for example, will start a degree in Business Stud-ies in August. There are nurses, teachers, logistics managers, farm managers, accountants and government officers who are all graduates of Sarnelli House. And many more are currently in some type of post secondary education. The education is not cheap as even the government schools here are fee paying but with the help of sponsors and international donors, all children are able to attend.
My time here is busy. I teach English pretty much every day, three days for four hours, three days for two. The children are on their school holidays now so there are many hours to be filled. The standard of English is very poor, about half of the children don’t know their ABCs and in some cas-es, this is after five or six years of state school English classes. Others are better and have some vocabulary locked away in their heads and there is a handful who are actually quite impressive. I realise I won’t be able to make a huge amount of progress with them but any help I can give is good. Other then teaching, I play games with the kids, take them swimming in a pool built by a Dutch foundation, referee football matches of a very poor standard and also help out with admin work in the offices, such as updating written reports on the kids, helping with funding applications and maintaining the website and Facebook page. Every day is different and that’s good as the days are long. The heat doesn’t help - the temperature has regularly been hitting 44º which is no kind of weather for a Corkman! But I drink litres of water and stay in the shade. These high temperatures could tire me out though so it’s important to pace yourself. Recent thunderstorms knocked out our air conditioning for a few nights and that was uncomfortable but most of the villagers nearby don’t have such a luxury so I’m not going to gripe. I don’t watch TV or get to see any live sport and don’t miss them one bit, which has surprised me. It might be different when the Cork hurlers win the All-Ireland though!
The biggest obstacle is, of course, the language. To these ears, Thai sounds like a record being played backwards and as it’s a tonal language, one sound can have up to five different meanings depending on whether it’s flat, rising, falling etc. I thought I had worked out some basics but was politely informed yesterday that I was using the verb ‘to want’ the wrong way so who knows what I’m saying half the time. The Thai are polite so they just nod at whatever garbage I’m spouting, like used to happen at IHS board meetings! At least I haven’t made the same error as one unfortunate visitor who mispronounced one poor child’s name every time, instead calling her the (rather rude) slang for a female body part. He had no idea why everyone was giggling when he called her…
Finally, I may be six thousand miles from home but a few weeks ago, I met a woman who was here for the day visiting a teenage girl she sponsors. We got chatting and, believe it or not, she’s from Freshford and knows Ger O’Reilly!
If anyone would like to learn more about Sarnelli House, the website is sarnelliorphanage.org and also at
facebook.com/sarnellihousenongkhai
Brian O'Riordan, I.H.S.
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Recent I.H.S. Publications
Our Annual Report 2014 and Spring Magazine went out to our members two weeks ago. You can download both by clicking on the links above. Both are jammed packed with great information and are a great read.
"Outside of a dog, a book is a man's best friend.
Inside a dog it's too dark to read'"
Groucho Marx
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I.H.S. Ageing Conference May 2015
The second Ageing Conference held by the Irish Haemophilia Society took place in Hotel Kilkenny on 16th and 17th of May. The two day conference was a great success with a lot of discussion in each of the sessions. The first speaker at the conference was Dr. Niamh O’Connell, who discussed Ageing and Treatment Protocols. She pointed out that people with haemophilia who have access to good treatment are living to the same live expectancy as the general population. Ageing is unavoidable for people but there are also haemophilia specific issues that begin to become apparent such as arthropathy, impact and increased incidence of infections and osteoporosis. Arthropathy can increase pain and reduce mobility. As a result there is a greater need for focussed physiotherapy and exercise. Osteoporosis is the loss of bone density as we get older. With most people the foundations to reduce the effects of this were laid when they were in there teens and 20’s with active sports. This foundation cannot be undone by many people ageing with haemophilia due to damaged joints and limited access to treatment as they were growing up; however the effects can be reduced with weight bearing or resistance exercises yet; due to damage in the joints over time this will have to be done with a specific program that could include factor adjustment. In the general population we have the first cohort of people who have their own teeth. Dr. O’Connell talked about the importance of continued monitoring of your teeth and getting to know your dentist. Dr. O’Connell also highlighted the importance of getting a G.P., especially as people age and become increasingly susceptible to the various conditions and issues that we all know about as we get older.
In addition to this, Dr. Bill Cuddihy G.P., discussed the non-haemophilia specific issues that arise as we all get older, such as cancer, diabetes, heart disease and dementia. He made an excellent point that “If you want live well when your 60, you don’t start when your 59”. All of these conditions are best tackled throughout your life by staying active and reducing risk factors such as smoking, alcohol and he placed significant importance on eating a balanced diet and good weight management.
Dr. Amanda Clifford from University of Limerick, talked about preparation for orthopedic surgery and falls prevention. One of the key things that improves ones recovery after surgery is the time spent prior to it building up muscles as much as possible around the specific joint being replaced or fused. This “Pre-Habilitation” helps improve ability to tolerate surgery and minimises deterioration with regard to the functioning of the joint. Again exercise before and after surgery is a recurring theme in this session.
Other sessions from the day included Changing Bleeding Patterns as we get older and Pain Management. Both of these sessions were presented by Dr. Kevin Ryan. The first part of the session on Changing Bleeding Patterns talked about the already troublesome joints. With each bleed over your life time, further damage to the joint will occur and rehabilitation at this stage is often more difficult with an increased risk of fractures. Keeping the joints mobile and muscles strong is key. This can be achieved with physiotherapy, pain medication, prophylaxis and potentially synovectomy. He also discussed the increased risk in the general population of intracranial bleeding. This obviously poses a greater risk to people with bleeding disorders; hence it is something that is noted as we get older. He also explained in detail how pain is felt, the management of these symptoms by medications and the best way to use them. A very interesting discussion ensued on the acute pain you get when you have a bleed versus the long term chronic pain of arthropathy, including other management techniques and assistance for an occupational therapist and psychologist.
On Sunday Miriam Coghlan, pharmacist at St. James’ Hospital, talked about the challenges of taking multiple medications. She highlighted that in St. James’, patients are taking on average five medications per day, including over the counter and herbal medications. With all of these potential interactions it is very important to monitor what we take, how long we are taking it for and why we are taking it. She also mentioned the importance of keeping a list on your phone, in your wallet or simply bringing all the medications you are on with you to hospital appointments to make sure that you are only taking what you need and none of them are counteracting the others. She also provided very good tips on how to monitor taking medications by working them into a routine such as leaving them by a toothbrush, phone reminders, putting extras’ in your car or at work as well as the good old fashioned pill box.
Greig Blamey was the final speaker at the conference and he specifically focused on what seemed to be a running theme throughout all the sessions over the weekend. Being fit and exercising is important but the gap between being and getting can be tough one to cross. This session focused on the little things we can do to become more mobile. Starting small and making sure that no harm is done to joints or other damaged areas and then slowly building up through work with the physiotherapist and maybe even a personal trainer to improve movement in a sustainable and relatively pain-free way. He also discussed the importance of balance and improving this by standing on one leg, trying to balance and when this has been managed closing your eyes. This all improves the proprioception to prevent against falls and weakening joints. It has to be the right prescription or else the side-effects are going to be too much to deal with. This conference, like the last one, was full of wonderful, pertinent discussion between speakers with members and members with members throughout the entire weekend. It is a great conference to meet old friends, make new friends and discuss new ideas and have a great conversation. It was brilliant to see everyone and catch up and looking to many more with all of you.
Declan Noone, I.H.S
More of this article will feature in our Summer Magazine.
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Parents Conference 19th - 21st June
Closing date for booking is this Friday 29th May 2015. We are delighted with the response to this conference and are looking forward to seeing you all in the Sheraton Hotel, Athlone. Confirmation letters will be posted out to members this Friday 29th May.
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VHI Women's Mini Marathon
Nina is training so hard for the upcoming VHI Women's Mini Marathon this weekend. You can support the I.H.S. by supporting her. All you have to do is click here to donate to a great organisation and an even better cause.
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Unique Patient Identifier Roll out
At the IPPPOSI Roundtable on the 26th of May on “Health Information: Development and Next steps”, Jim Breslin, Secretary General at the Department of Health talked about the roll-out of a national patient identification number.
This is a unique, non-transferable number assigned to all individuals using health and social care services in Ireland, which will last for their lifetime. Its purpose is to accurately identify the individual, enabling health and social care to be delivered to the right patient, in the right place and at the right time. It is estimated that the roll-out to everybody in the country will take place over the next five years; however the start of this is due to begin July 2015. The first group to be allocated these identifiers will be the under 6’s in line with the roll-out of free GP coverage for this group. People with life-long conditions are also high priorities on the list and pilot schemes are . The first full site which will entirely encompass all aspects of the patient identifier will be the new Children’s Hospital planned for St. James’.
There are a number of advantages to a unique health identifier. A G.P., a public or private hospital and any locations where the health services are provided will be able to type in the identification number and read your most recent medical records, improving care for the individuals and reducing issues such as medication interactions.
When allocated the identification number, there are two questions concerning consent and both have a simple yes or no response. The first question is for clinicians and for them to access the information for treatment purposes if you attend their clinic. The second consent is for research purposes so that your health information can be used to develop and improve research. This has two main benefits, firstly it will allow links to other conditions to be identified. In the past an example of this was the identification of the link between smoking and cancer. It will also help with Ireland becoming a host for more international clinical trials. There is a bit of concern at the moment around the consent for research. Currently, the response to the question is yes or no and this will remain like this. However, the details of what exactly will be accessed for research, who will have access and what are the guidelines around the use have not been entirely defined and needs to be worked through in more detail.
Declan Noone, I.H.S.
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Survey of coagulation factor concentrates tender and procurement procedures in 38 European Countries
Procurement of coagulation factor concentrates (CFCs) for the treatment of haemophilia is a vital process that determines the quantity and quality of factor replacement therapy. The aim of this study was to examine the different tender and procurement systems used in Europe for the procurement of CFCs and the outcomes produced by the various systems.
To download this click here
B. O'Mahony1,2,3,*, D. Noone1,2 and L. Prihodova2,4
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Want to Volunteer with the Irish Haemophilia Society??
"I never would have imagined all those years ago, when I was one of three staff members’ kids who just tagged along with our parents to an Irish Haemophilia Society AGM, that the involvement of children at these weekends would become so big. It was back in those early years, must be 13 years ago now, that the children’s groups began. Originally only one group, with only three members, we were kept entertained with trips bowling, swimming and to the cinema. In the following years more and more kids were coming to the AGM and we started to do more activities, like day trips to castles, farms and caves or horse-riding, circus school, samba drumming and the once legendary Saturday night disco. For the last seven years or so I’ve been volunteering at the I.H.S. conferences as have several of those who used to come to the conferences as kids just like me and as the years go on more and more of the kids from the programmes are showing interest in becoming volunteers when they get older. I think this is a really good indication of how well the children’s programmes work. In 2010 I was asked to share the responsibility of leading the programmes, which would be coordinated by Fiona Brennan, with Catriona Moriarty. I really enjoy volunteering with the I.H.S. and have made several life long friends, not to mention gaining a lot of experience and skills. As the programme continues to expand, we need more volunteers – I hope you sign up to the I.H.S. volunteer programme, it really is a great team to be a part of".
Paul Dunne - Youth Group Leader
If this is something you are interested in and you feel you have something to offer just contact Fiona on 01 6579900 or fiona@haemophilia.ie
To read more testimonials from volunteers click here
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A belly full of laughs at the Laughter Lounger 29th May 2015
The I.H.S. would like to thank all who came to the Laughter Lounge fundraiser and thanks to everyone who supported by buying tickets! We had a great night and some great laughs too!!
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