Lymphovenous Canada: Addressing lymphedema youth issues

The Mercy Hospital in Melbourne, Australia specializes in maternity care and gynecological cancers. I work with a team of 15 people in the state's largest Lymphoedema Clinic within this hospital catering to all members of the public who have lymphoedema, regardless of the cause of lymphoedema, the gender of the client, or the age.

Our clinic has been in existence for about 11 years and we have a team of 3 medical officers, 7 therapists (mostly physiotherapists), 1 dietitian, 2 social workers and 2 receptionists. The multidisciplinary team follows the medical model for service delivery but is able to be very flexible and allow for innovations within the clinic if they are seen to provide best practice for the clients.

Most clinics which treat lymphedema in Australia treat both primary and secondary lymphoedema and the Mercy Hospital is no different. About 60% of clients at our lymphoedema clinic have had breast cancer, and over 90% are over 40. Of the group under 40 the majority of clients have had primary lymphoedema however there are a number of clients in this age group who have lymphoedema as a result of an existing condition (e.g. spina bifida and Prader-Willi Syndrome can both result in lymphoedema).

Not many people are happy to receive the diagnosis of lymphoedema, however the challenges resulting in the diagnosis appear to be different for each age group. Finding out the swelling in your limb has no cure and that treatment involves wearing a compression garment is often hard to process. Being young and having this diagnosis can be overwhelming and can challenge any treatment plan offered by a clinic.

I set up the program for young people in January of this year (2005) after doing a bit of research to make sure any changes we made would be of more help, not less! The entire team was eager to assist and were extremely helpful in identifying areas where they could change their practice to help with the project.

In the group of younger people coming to the clinic not many were coping well with the diagnosis. Often the ones that were coping were the ones that had lymphedema at an early age and their parents had instilled in them that it was a normal thing. They just had to do a little bit more. Those kids - when they hit teen years - seem to cope better than those who were diagnosed at puberty.

I pretty much put it to the young people as to what they wanted to do about it since not many of them were coping well. And each and every one of them stated they wanted to see more people their own age at the clinic.

By July 2005 we were able to have a young people's only day at the clinic. We couldn't have everyone under 40 come to the clinic so we decided in this trial just to target people aged between 13 and 25 who were diagnosed only with lymphoedema and not with any other contributing factors (eg Prader-Willi). For the young people's days we made some simple changes that made a difference to them - like having staff come in with casual clothing. Age appropriate music in the waiting room. We had food like popcorn and things that made the clinic just a bit more comfortable for the young people. We also changed some of the reading material because the bulk of our clients are over 60 and they tend to read different things that do not interest young people, like gardening. So the reading material is completely different for a 16 year old. And that made a difference.

Then we just ran the clinic as normal: that is with a medical review, with a doctor and a physiotherapist. And then they have a social work review after that. So we just did that as normal. And we also had physiotherapy appointments and normal therapy appointments checking compression garments and that sort of thing.

The big difference that day was that there were only other young people in the waiting room. These were people who had never seen anyone else their own age in the clinic. It was a big change for them. Because usually they were the only young person in the waiting room. They'd be sitting with people who had cancer, or had obesity or that couldn't handle their limbs well and had open wounds.

We also ran a workshop in July on a trial basis to see how it would work called: Starting with You. I targeted 19 to 25 year olds. There were six girls in the group. It was a workshop where we met for 2 hours once a week for 3 weeks. They thought they just came and chatted but we had quite a bit of structure around them as well. My co-facilitator was a girl with a chronic illness who had had come through another program called ChIPS (Chronic Illness Peer Support). She has been running those groups for the past few years and she's only 21! She came along and co-facilitated the group.

The second they got in there they were so relieved to see each other. The first thing they did was whinge a little bit about having lymphedema - they just needed to with other people their own age. Once they got that out of the way they were able to bring humor and bring funny situations into it. And talk about coping strategies and how to explain it to different people.

You do have the issues of sexuality and relationships. That was another thing that came up in the workshops. They were very very relieved to say - it's just not that sexy. And talk about choice in partners because of the change in themselves.

The issue of having children has also come up. I've made contact with genetic counselors. They're going to come and give a bit of a speech. What's happening in the world of lymphedema. I think it is important for them also to know how to look after themselves during pregnancy.

It can lead to changes during pregnancy - clinicians here say it requires a little bit more care if they are feeling extra heaviness in their limbs. I think the clients would like to know that the clinic is here for them through pregnancy as well.

At the end of the 3 weeks it was quite a close group. We had one girl who had never worn garments and always wore thongs and really defied everything we recommended. Suddenly she's wearing garments all the time now. She clearly was the one who had the most significant change but they all felt so much better after that group.

We'd like to continue the group but it's now come down to money. The girl who was co-presenting with me was doing it on a voluntary basis. I'm able to run a group but I do need a co-facilitator. And it works really well having another person with lymphedema or a chronic illness. So it now comes down to money - which we don't have a lot of.

The 19 - 25 year olds are coping a lot better because they went through our program. But there is still the 13 to 19 group. There are a lot of kids in that group who are still struggling. I want to do a workshop with them. But it will take a lot more planning on my behalf because a lot of these kids are not enthusiastic about talking to people in the clinic.

Most people under the age of 18 go to Melbourne's children's hospital. Once they hit 18 they get out into the community with often very poor transfer of systems. Contacting the Children's Hospital and making contact with the staff to improve transfers is our next project. That's another thing I want to get involved with - but there are so many things!

And there are also the people 25 - 40 years who aren't coping particularly well but a lot of times can prevent their condition from getting worse. There are a lot people in those groups who I still find crying after coming out of the waiting room thinking "that's how I'm going to turn out". Meeting others their own age helps them to realise the future isn't so bad and that they can gain an awful lot of control over their condition as it has been diagnosed so early.

What I saw in that one workshop was so inspiring it made me eager to do it for other people. The girls who went through it also want to see others support by their own workshop because they had such a great response. They have decided to start their own support group called L.U.P.A., which stands for: Lymphedema Under 50's Peer Association. And through that group they are trying to raise money for me to run more workshops.

They are so inspiring! They are creating a welcome kit for young people so they don't feel like they are the only person under 50 with lymphedema. And they are designing a web site so young people can get information. So watch for the Melbourne LUPA launch in 2006!