| European male 7 years | |
|---|---|
| Our question | Parents’ response |
| Type of primary lymphedema (if syndrome). If not known just write not known or no diagnostic test done | KIF11 |
| Parts of body affected by œdema | whole body, mainly toes and both feet |
| Gender | Male |
| Age of onset | birth |
| Age of diagnosis | 1 year |
| Current age | 7 years |
| Continent | Europe |
| What was the hardest part learning about your child’s diagnosis and how did you overcome some of these obstacles? | KIF11 is a very rare gentic disorder. Online we couldn’t find a lot about the syndrome and also not about primary lymphedema and intestinale Lymphangiectasia. The feeling of being alone with the diagnosis was the worst feeling. With every new piece of information about lymphoedema, we became more confident in our everyday lives. |
| What practical things do you do to make your child’s lymphedema easier to manage? | During the summer time we are trying to go for a swim very regularly. For the winter time we bought a indoor trampolin to support him with good sport exercises. |
| Do you involve or encourage your child in their own self-care, and how? | Managing the lymphedema is one part in our daily routine, same like brushing his teeth. He is now able to say for himself whether he feels better with a bandage or compression stocking. |
| What support functions (i.e. medical professional, patient association, school) has been the most helpful to you and your family? | After the diagnosis, we were fortunately able to stay in an expert centre for 3 weeks. We learnt to bandage there. We also learnt to “read” his body and to manage it. That was good to learn the theory about lymphedema and to get first practical experience. But more helpful was to meet other parents with KIF11 kids (or other syndromes with primary lymphedema). |
| What advice would you give other parents who are at the start of the journey, just learning about the diagnosis? | Connecting with other parents via our patient organisation was the key for us. Social media helps to find others parents if there is no patient organisation in place. We would like to say to newly affected families: relax. Lymphoedema can be managed well with a little routine and good information, even if it is a lifelong task. |
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