life with type 1 diabetes

Clare Rosenfeld:
Traveling the World to Make a Difference

This past summer, Clare Rosenfeld, 18, got to travel to three different countries in three weeks--El Salvador (in South America), Tanzania (Africa), and Bangladesh (Asia). But she didn't go to just have fun and see the world; she went to see how people with type 1 diabetes live in these countries. Clare was diagnosed with type 1 diabetes (juvenile diabetes) herself at age 7, and she's been raising awareness about the disease ever since.

"I realized how little people knew about type 1 diabetes, and that made me want to tell everyone. I wasn't shy about it," Clare says.

By 2001, she was talking to kids all around the world through the International Diabetes Youth Advocates, a group she founded on the Children with Diabetes Web site.

When Clare told the International Diabetes Federation (IDF) her dream to unite young people with diabetes around the world, they offered to help. Now she's creating programs with the IDF that will encourage kids and teens worldwide to support each other and get involved in advocacy.

Recently, while speaking at an IDF conference in Paris, France, Clare mentioned that she would like to see for herself how people in developing countries live with type 1 diabetes. The next thing she knew, Novo Nordisk, a company that makes products for people with diabetes, was offering her that chance!

That's how Clare and her mom, Kari, found themselves on the adventure of a lifetime this summer, traveling from their hometown in Oregon to the farthest corners of the world. Clare recently talked to CFK about what she saw and experienced, and to tell the stories of the people she met. Read on to see why Clare gained a whole new appreciation for her daily type 1 diabetes regimen' why it's so important that we find a cure for everyone with diabetes.

CLARE'S TRAVEL REPORT

EL SALVADOR: June 27-July 3
Mom and I arrived in San Salvador, the capital of El Salvador, on June 27. We stayed in a hotel there for the week, taking short trips to different parts of the country each day. We even visited some families that live in the jungle!

The first people we met were members of ASADI, which is El Salvador's national diabetes association. They are a dedicated group of people trying to establish diabetes clinics in local hospitals, but they have very limited resources. Many people can't even get to the hospitals because they can't afford public transportation.

I was definitely in shock after visiting with the families in El Salvador. I had heard about how different things would be from life in the U.S., but seeing it for myself was still upsetting. I met with many families who have children with type 1 diabetes, and they have forever changed my view of the world. In the U.S., we test our blood sugars at least five to six times a day. But there, IF a family is even lucky enough to get a blood sugar meter, the test strips are so expensive that sometimes they can't afford to test more than once a month! As people like me know, this makes it almost impossible to control their type 1 diabetes. Many families don't have any testing equipment, and don't know how to treat themselves even if they did.

Because of their poor control, a lot of the kids are showing signs of complications already. I never thought I'd say this, but I am so thankful for being able to test my blood sugar. I remember complaining about testing so often when I was younger and, yes, it is terrible and painful, but now I see that I am very fortunate to be able to be healthy.

By the end of the trip, I was exhausted but so glad that I went to El Salvador. I was able to meet lots of people and visit several clinics. Mom and I spent lots of time encouraging people not to give up, to help each other, and to do whatever they can to get the education and support they need.

TANZANIA: July 5-11
We flew into Dar Es Salaam, the capital of Tanzania, after staying in London for two days. We traveled between Dar Es Salaam, another city called Dodoma, and the island of Zanzibar.

As soon as I arrived I noticed some big differences between Tanzania and El Salvador. There were no reliable statistics about diabetes in Tanzania, so it was hard to find out how severe the problems are. We met with some members of Parliament, who seemed very open to what the Tanzanian Diabetes Association (TDA) is doing, but the TDA hasn't been around for long and doesn't have enough resources to pay for training for doctors and nurses.

One day while we were there, 250 members of Parliament were screened for diabetes by the TDA. Amazingly, there were five new diagnoses of diabetes! And that was in addition to the members who already knew they had diabetes.

In addition, we met with some more wonderful families. One girl named Salama on the island of Zanzibar has had an especially hard time. She has a clubfoot and lots of wounds that are not healing. Because the doctors in Tanzania haven't been trained in diabetes care, even they don't know how to help her. They took her off insulin for a whole month because she had one low blood sugar and they thought she didn't need it.

Needless to say, I experienced a lot of culture shock. I believe everyone deserves good health care and no one should have to live the way Salama lives in Tanzania.

BANGLADESH: July 12-17
After stopping in Bangkok to wait for a flight, we arrived in Bangladesh. The first thing I noticed was that half of the country was under water! They have severe flooding every year, and it was the middle of monsoon season. The government spends most of the money on treating waterborne diseases and repairing flood damage, which leaves very little for other things, like diabetes.

The size of the population also has had a huge impact on the treatment for people with diabetes. Bangladesh has a great health care system set up, but there are just too many people to treat. In Dhaka, the capital, they can only treat a small percentage of the population, so they need to be able to expand the health care system that is already in place.

I remember I had no appetite the whole time I was in Africa, and then I got sick from the food in Bangladesh. There are heavy influences from India and Pakistan in Bangladesh, and I had a hard time knowing how much insulin to give myself for some of the spices I encountered. 

Fortunately I was better in a day or two. We met a girl named Ajiron who was abandoned by her parents because of her type 1 diabetes. She was left on the street, but she made it to the hospital in Dhaka. A woman who is a dietician began to treat Ajiron and decided to adopt her. We went to their home and saw that Ajiron is getting good food and treatment. It was very inspiring for me to see how this one girl's life was changed so dramatically with good treatment. It made me realize that we all have a responsibility to do what we can to help others.

Later on we met another girl I will never forget, named Azme. Since insulin is too expensive for most families, her family was buying it at a cheaper price on the black market. Not only is this illegal, but the bigger problem is that there is no way to know the quality of this insulin, and it's different every time you buy it. Because the insulin is so weak, little Azme is taking huge syringes full of it just to feel good. And every time she takes it, it will have a different effect on her because the quality is different.

By the end of the trip, I was really looking forward to getting back home to the U.S., but I knew I would never stop thinking about the kids and families I met. I have a whole new appreciation for what I have. It is a privilege to be able to live a healthy life, and I want to do whatever I can to give everyone that privilege.

Clare currently attends Lewis & Clark College in Oregon. Upon graduation, she hopes to go on to medical school and become a doctor so she can continue to help people live healthy lives.

This article was published in the Winter 2005 issue of Countdown for Kids magazine.