Marc talking with the parents of Ruchi (Left on the photo, she is 8 years old)

On invitation of CFW, I visited, together with Karin, a friend of my, the CF-workshop in Delhi which was organised by CFW and Dr. Kabra of the All Indian Institute of Medical Sciences (AIIMS). This workshop was made possible because of the fundraising I did with my organisation Stichting Lopen voor Lucht this year. The aim was to share some knowledge of CF with the medical staff of AIIMS and parents of children with CF and to examine the children by a western CF-doctor and physiotherapist.

Me and my friend Karin arrived in Delhi on Friday the 14th. In our hotel we were joined by Dr. Harry Heijerman, pulmonologist at the Hagahospital in The Hague, The Netherlands, and Katharina Stepankova, boardmember of CFW. Louise Lannefors, physiotherapist of the CF-Centre of the Lund University Hospital in Sweden would join us later. Dr. Kabra had arranged a taxi for us and Hafeez Achmed, representant of the CF South Asian Trust offered himself to be our guide during our stay. This is my report of my visit to Delhi.

Day 1, Friday, December 14th

Dr. Harry Heijerman checks one of the CF-children

We used the day to do some sightseeing in Delhi. Hafeez took us to the Jama Hasjid Mosque, the biggest mosque in India, and to Humanyun’s Tomb. This last building is like the famous Taj Mahal in Agra. It is – otherwise than the Taj Mahal – built in Red stone.

Of course we had to taste the Indian kitchen and we had lunch in a small restaurant in the middle of some busy street in Old Delhi. Ruti and Chicken Tandori, it tasted good although it was very spicy. What I will remember most of this first day was the contrast that Delhi offers: Richness and poorness seems to walk here hand in hand. There are modern, western-style shops, while on the other side of the street people sleep just in carton boxes. There is also a lot of rubbish all over the city and the streets are noisy because of the car and motordrivers that are continuously honking.

Day 2, Saturday, December 15th

Marc answering questions from the audience during the first day of the workshop

The first day of the workshop. Today began with the lectures that are given by Dr. Heijerman, Katharina Stepankova, Louise Lannefors and myself. The audiences are parents with children that have CF and the medical staff of Dr. Kabra.

Dr. Heijerman tells the people about the cause of CF and about the latest development in medicines and treatments. Louise tells the people about the need and techniques of physiotherapy for CF-patients. Katharina tells about her life as a mother of two children with CF. Unfortunately, she lost one of her two sons in 2007 because of CF. At the end of the afternoon it was my turn to tell the people something about my life as a CF-patient and I tried to convince them how important it is to do as much as possible by yourself to get a better quality of life.

Day 3, Sunday, December 16th

Louise practising with one of the kids

We left early to AIIMS. Many of the parents we met yesterday are back again to let their children be examined by Dr. Heijerman and to learn what physical exercises they can do from Louise. Louise was great. The way she taught children to do their exercises and to spray their medicines was amusing, but very effective and very tiring for Louise, I think. She used simple devices like a skippy ball and balloons.

In the meantime, Katharina and I talked with the parents and answered their questions. Most of the parents we met are able to pay for medicines and treatment by themselves or they work for the government who pays the costs for them. But we realised that this is just the tip of the pyramid. The largest groups of parents are poor and cannot afford treatment and medicines.

Manav (3,5 years old): He can't walk, because his muscles are too weak because of a lack of nutritious subsances

Late in the afternoon I decided I had to take some fresh air and together with Karin I visited the Bahai Temple, a church for all religions, and the ISKCON Temple, a modern Hindi Temple.
In the evening we all were invited for a diner by Dr. Kabra in a Vegetarian Indian restaurant.

Day 4, Monday, December 17th

One of the CF-children we have met

Another day with the CF-children and their parents. Karin is suffering from a cold and is not feeling well. She decided to stay in the hotel. Today we met the oldest patient of the group of about 30 patients. A girl aged 20, who is doing quite well.
After we saw all the patients, we could only conclude that there is a lot to do in India to make effective treatment of CF-patients possible. According to Dr. Heijerman, some patients we saw during the last days will not make it between now and two years. Their condition is bad and they need urgent treatment in a hospital. The problem is that they will not go to a hospital and their parents don’t take any action. And that’s one of the main problems I think. When I talked with the parents I often found out that if their child doesn’t take his medicines or doesn’t do their physio, they are not forced by their parents to do so. They seem not to realise how important it is to take medicines and to do physio in order to keep in a good condition and live longer.

Lui practicing with a nubiliser

What needs to be done in India first is to change the mind-set by giving lots of information.
In the evening Hafeez took us to a local market where real Indian Handscraft was sold. Afterwards we were all invited to come to his home to join him with his wife and kids for dinner. It was wonderful and I think it was the best diner we had in Delhi.

Day 5, Tuesday, December 18th

Our last day in Delhi. Hafeez took us to the Qtub Minar, a 72 metres high tower, built in 1193 and finished almost 200 years later. The tower lies in a beautiful park together with some other old buildings. In the afternoon we did some shopping in a bazaar and we bought some presents for Hafeez, his wife and kids. And then it was time to say farewell to Hafeez and Delhi. Louise and Katharina had decided to stay two days longer in India and visit the Taj Mahal the next day.

The complete team (from the left: Marc, Karin, Harry, Catharina and Louise)

Karin, Dr. Heijerman and I went to the airport and late at night we were sitting in the plane, flying back to Holland. After all it was a short stay in Delhi, but I had the feeling that in those five days I had experienced more than during my fourth month walk through Europe this summer. But my visit taught me that I wanted to do more work in the future for the CF-patients that are not in a luxury position as I am, living in a rich county as Holland and getting all the benefits of modern CF-treatment.