Interview with Laëtitia, mum of 17 month-old Ethan who has primary lymphedema

What are Ethan’s symptoms?

Ethan has edema affecting all four of his limbs and his face. He looks different every day. He also has chronic diarrhoea and vasomotor urticaria.

How do Ethan and you cope with his illness?

Ethan is a very pleasant child, although he’s a little nervous about hospitals now. For my part, I am constantly attentive to his body. My number one objective is to meet his needs because I care about his well-being.

What treatments has Ethan had?

Ethan has been hospitalized 4 times. He had a course of thermal spa treatments in July 2018 in Luz Saint-Sauveur, France. He has physiotherapy once a week in a non-hospital setting.

How do you participate in Ethan’s care?

I perform manual lymphatic drainage on him every morning and every evening. A physiotherapist that we met during his spa therapy taught me how and gave me confidence. I apply bandages depending on how supple his skin is. I avoid using them daily to help him tolerate them better since he will have to follow this protocol all of his life. Today, my aim is to do a paramedical training course that would enable me to get more involved in his treatment. I want to show that good management can help ensure good quality of life.

What changes has his condition made to your daily routine?

We see life differently now. Every little bit of progress is magical, like when Ethan clapped his hands for the first time. We don’t do the same things as before, such as going to the beach, because we need to avoid heat and mosquito bites. But we don’t complain because it’s for Ethan’s good.

Is there a family history?

Not at all. There are no other cases in our family. I’m convinced that Ethan’s disease is a symptom of a more complex, undiagnosed condition.

How do you see Ethan’s future?

I don’t know... We take each day as it comes. Since we don’t know exactly what his condition is, it’s impossible to predict how it will evolve. To start with, the doctors thought he had Milroy disease. Today they suspect it may be Waldmann disease.

You have set up an association...

Yes, called “lympho’vie d’Ethan” [Ethan’s life with lymphedema] to subsidize his care since lymphedema treatments are not cheap: spa therapies and bandages are only partially reimbursed by the system. Today, thanks to the association’s Facebook page, a discussion forum has been created, other mums get in touch with me to share their own experiences, and people discover that they too have lymphedema when they visit the page.

What advice would you give parents who have a child with lymphedema?

I would advise them to dress their child comfortably to ensure his or her well-being and not to be afraid of performing lymphatic drainage. Each body is different. Parents know their own child’s body. For my part, I tried several methods and then observed how Ethan’s body reacted before I found the right one. 

If you have any questions, ask your doctor for advice.