| European male 6 years | |
|---|---|
| Our question | Parents’ response |
| Type of primary lymphedema (if syndrome). If not known just write not known or no diagnostic test done | No known syndrome/no genetic test performed |
| Parts of body affected by œdema | Hands, forearms, right lower cheek, intestine |
| Gender | Male |
| Age of onset | From birth |
| Age of diagnosis | 6 months |
| Current age | 6 years |
| Continent | Europe |
| What was the hardest part learning about your child’s diagnosis and how did you overcome some of these obstacles? | Not knowing how the situation will evolve, possible future challenges linked to other children’s reactions. In general we have tried to have a positive and constructive approach, openly discussing things and supporting him in the journey of understanding the condition and how it may or may not limit his life. |
| What practical things do you do to make your child’s lymphedema easier to manage? | We massage and bandage almost every night, have adapted our family’s diet to accommodate some restrictions that affect him |
| Do you involve or encourage your child in their own self-care, and how? | We have educated him about wht he should and should not eat, so he can make correct choices when we are not there. He is still too young to manage self bandaging. He is aware of the importance of skin care but again a little too young to be consistent in applying the rules. |
| What support functions (i.e. medical professional, patient association, school) has been the most helpful to you and your family? | Contact with other parents through a patient association has been valuable as well as gradually building a support network around us with a group of doctors, physiotherapists, and compressive garment suppliers we trust and rely on for guidance and therapy. |
| What advice would you give other parents who are at the start of the journey, just learning about the diagnosis? | I would strongly advise them to focus on the good, look at the positives and enjoy every day with your child beyond the condition. I often find that the approach from those around us (other parents, medical professional etc.) has been focussed on the negatives, the challenges and the obstacles but as parents we are conditioned by this attitude and are not encouraged to focus on how great life can be for our family regardless of the condition that affects our children. |