| European female 2.5 years | |
|---|---|
| Our question | Parents’ response |
| Type of primary lymphedema (if syndrome). If not known just write not known or no diagnostic test done | Turner Syndrome |
| Parts of body affected by œdema | both feet |
| Gender | Female |
| Age of onset | birth or before |
| Age of diagnosis | 3 months |
| Current age | 2.5 |
| Continent | Europe |
| What was the hardest part learning about your child’s diagnosis and how did you overcome some of these obstacles? | the hardest part was the trembling, not knowing what the diagnosis actually meant. with the lymph problems, we initially asked ourselves whether she would be able to learn to walk at all. with turner syndrome, it is generally the case that you don’t know what problems will arise. |
| What practical things do you do to make your child’s lymphedema easier to manage? | we have toecaps caps and stockings. we also bandage her feet every evening. once a week we go to physiotherapy for lymphatic drainage and bandages. |
| Do you involve or encourage your child in their own self-care, and how? | i never force her to do anything. i try to get her to do everything voluntarily. so far it’s going well. i always try to do the bandages in a pleasant atmosphere. if it doesn’t fit, we sometimes skip a night. |
| What support functions (i.e. medical professional, patient association, school) has been the most helpful to you and your family? | our physiotherapist was very helpful. she helped me when i couldn’t be active myself because i still had to digest the diagnosis. even now she always thinks along with us and supports us. |
| What advice would you give other parents who are at the start of the journey, just learning about the diagnosis? | Find a forum of like-minded people. Connection to a real specialist, e.g. Földiklinik. |
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