| European male | |
|---|---|
| Our question | Parents’ response |
| Type of primary lymphedema (if syndrome). If not known just write not known or no diagnostic test done | Klippel Trennaunay Syndrome |
| Parts of body affected by œdema | Left Leg, foot, toes, botton and testicles |
| Gender | Male |
| Age of onset | Newborn |
| Age of diagnosis | |
| Current age | |
| Continent | Europe |
| What was the hardest part learning about your child’s diagnosis and how did you overcome some of these obstacles? | Initially, the lack of answers from the professionals, their lack of interest in our unanswered questions, every day there were doubts about how to proceed and what to do to improve our son’s quality of life, what to do so that his condition didn’t worsen. With the diagnosis, the solution was not to give up researching until we got the answers or clarified our doubts. We then started another battle, to get personalized and really well-made elastic compression, as this is essential for maintaining is condition. It’s also very difficult to find footwear that fits the daily needs of lower limb lymphedema. Especially for growing children, this need is an almost monthly problem. |
| What practical things do you do to make your child’s lymphedema easier to manage? | Raise the feet of the bed. Warm water baths. Clothes that are loose, comfortable and made of cotton. Shoes one size up, with a wide base, and that can be laced up or Velcroed to suit your needs. Always moisturize your skin and keep your nails healthy. Avoid direct exposure to the sun, on the beach when lying in the sun cover your leg with a towel, preferably always wet. When traveling, try not to go without movement for too long. |
| Do you involve or encourage your child in their own self-care, and how? | He’s still very lazy in this respect. But he knows how to take care of his skin and nails. How to avoid situations of physical and psychological violence. He also does his own lymphatic drainage and knows how to put on his compression garment correctly. |
| What support functions (i.e. medical professional, patient association, school) has been the most helpful to you and your family? | Without a shadow of a doubt, the patients’ association is an incredible help, with a huge amount of experience in various fields, always able to help with advice on the most suitable clinical specialties for each situation and with great knowledge of the various situations that always arise. Psychological support is also essential. |
| What advice would you give other parents who are at the start of the journey, just learning about the diagnosis? | Look for a supportive association, and always research reliable/scientifically accredited information. Never give up, but sometimes we need to take a break to recharge. |
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