Editon 1 Volume 1 CFW Newsletter
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From the Editor's Desk
Sam Hillyard

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President's Note
Herman Weggen

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In Memoriam: A tribute to Jose Pulido
Ami Kolumbus, Barbara Palys, Mitch Messer
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Coping with Gastroesophageal Reflux Disease
Dawn McGuinness

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Research News

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CF in the Czech Republic
please see article for author names

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Gender and Survival for Young People with Cystic Fibrosis
Rosemary Miller

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Communication on Sexuality, Intimacy and Reproduction Issues
Anna Tsang
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Personal Experience:
Know Me By My Name

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Living with CF in Greece
Angeliki Preftitsi

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National News:
Belgium & The United Arab Emirates

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Support Networks :
The Donna M Crandall Memorial Foundation
The Starbright Foundation

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Mailbag
Letters to the Editor

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National News:

Belgium & The United Arab Emirates

Camels from Jordan. Thanks to Sarah and her mother for donating  pictures from their camel trek through Petra for use in the publication of this article.'AN ARABIAN FAIRY TALE'Camels from Jordan. Thanks to Sarah and her mother for donating  pictures from their camel trek through Petra for use in the publication of this article.
Karleen De Rijcke, Belgium

Last year, 6 Belgian CF patients lived their own Arabian fairytale of 21 nights in the United Arab Emirates (UAE), a country between Oman and Saudi Arabia. The goal of this visit was double: to offer a group of CF patients an unforgettable holiday, and to support care for people living with CF in the Emirates. The result was a unique experience and an interesting encounter with a new culture, a surprising landscape and hospitable people.

In collaboration with Yvette Van Hauwe, a long-time Abu Dhabi resident originating from Belgium, we set up a CF exchange programme between Belgium and the United Arab Emirates. The first step in this exchange project was the visit of 6 CF patients, a physiotherapist and the director of the Belgian CF association to the United Arab Emirates from 20 November to 12 December. The visit of Belgian CF patients to the United Arab Emirates was fruitful for both parties concerned.

Once Upon a Time…

Thanks to the good work of Yvette, the Hilton offered a 3-week stay in their 5 star hotels in Abu Dhabi and Al Ain FREE OF CHARGE and Rotana offered 2 free nights in Dubai. As in all good fairy tales, royalty played an important role. Shaikh Nahyan bin Mubarak, Minister of Higher Education in the Emirates, and Queen Fabiola, wife of former Belgian King Baudouin, gave us their generous support, thus opening a lot of doors. Besides, local residents and health care professionals offered us help and a warm welcome.

And so the fairy tale of 21 nights began for Carine, Dirk, Inge, Liesbeth, Stef and Ulrike. Greet (physiotherapist and wife of Stef) and Karleen from the Belgian CF association, could also come along…

A Dream Come True

For the Belgian CF patients, a visit to the UAE offered a unique chance to discover the beautiful and hospitable Emirates and enabled them to 're-charge their batteries', to obtain a surge of new energy and gain weight thanks to the delicious meals they were invited to share!

in the desert
In the Desert
Left to Right:
Dirk, Inge, Carine, Malek (Guide), Ulrike, Greet, Liesbeth, Stef and Karleen

Cruising through the desert (a very effective drainage method we can advocate to every strong hearted CF patient!), relaxing under the palm trees, indulging in unprecedented 5 star luxury, driving through surrealistic cities in a Cadillac (with one way opaque windows of course), enjoying royal hospitality in palaces and tents... You dream it... we did it!

SUPPORT FOR LOCAL CF PATIENTSback to  menu

Although the general health care in the UAE is of a high level, the care for CF patients is still underdeveloped and the public awareness about the illness is low. The median age of the CF patients is 8 years and the oldest CF patient known is only 16! Through our exchange programme, we could help to raise awareness and to create a network beneficial to the local CF patients.

During meetings with health care workers, families of CF patients, journalists and students, our Belgian delegation offered its experience in CF care, especially on Autogenic Drainage (one of the most effective physiotherapy treatments) which was developed in Belgium. For the local families it was a real revelation to meet CF adults who could cope so well with their disease. Their stories and demonstrations stimulated the families and health care professionals to continue their care with more knowledge, courage and hope.

The exchange project got broad coverage in the press in Belgium and the UAE. We really felt like stars after all those picture sessions and interviews for radio, newspapers and journals, such as the glossy, silver papered local variation of the Cosmopolitan or Vogue. And last but not least... we even appeared as a main news item on Abu Dhabi TV.

In local dressIn Local Dress
Left to Right: (Front) Dirk, Inge and Karleen
(Back) Carine, Liesbeth, a local journalist,
Yvette, Greet, Stef and Ulrike


The Story Continues…

In April we invited a local Arab paediatrician, Dr. Abdurrab H. Saleh, to visit Belgian CF centres. Our local professionals showed him all the aspects of Belgian CF care and the patients who met him in the Emirates took him to all the nice places in Flanders. He had a good look around and went back to the Emirates with a case filled with fond memories, knowledge and ideas. Back home, he wrote a proposal for the creation of a CF clinic and the ministry approved!

And there's more good news. The Hilton has invited a new group of 9 people for another 3-week stay later this year. We hope to use this opportunity to visit Dr. Abdurrab's new "Al jazeera CF Unit" in Abu Dhabi.

So you see, with the help of our good fairy - the energetic, dynamic and warm-hearted Yvette - our dreams came true. Just like a fairytale…

Karleen De Rijcke, Belgium
karleen@muco.be


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