| South American female 7 years | |
|---|---|
| Our question | Parents’ response |
| Type of primary lymphedema (if syndrome). If not known just write not known or no diagnostic test done | no genetic test was carried out, only lymphoscintigraphy |
| Parts of body affected by œdema | Right foot and toes |
| Gender | Female |
| Age of onset | Since birth |
| Age of diagnosis | 2 |
| Current age | 7 |
| Continent | South America |
| What was the hardest part learning about your child’s diagnosis and how did you overcome some of these obstacles? | My daughter was born with both feet, a swollen abdomen and genitalia, and after imaging and soft tissue tests, at 7 days old, the pediatrician referred her to an angiologist, who taught her how to do a massage that was unknown to us, who said it was a cuddle, and didn’t explain much more than that. When she was 6 months old, the only swelling that remained was on her right foot and toes, and we continued to wait for advice from the doctor, who only wanted to see her every 6 months. When she was 18 months old, due to the shape of her nail and her swollen toes, her big toe became inflamed and the doctor requested plastic surgery to “correct” it. Two more attempts were made, which although there were no further complications of this kind, left a deformed toe and a nail that was broken in half growing. As a mother, I understood that what was happening was a demonstration of a total lack of empathy and interest in treatment, so I decided to search on Google: “babies with swollen feet”, and as I am a person who believes in science, I read the scientific articles available in the searches, and read that it was called “lymphedema”. I can say that this was the first obstacle I overcame, that of ignorance, because I managed to find a doctor, 400km away from our town, who diagnosed Alícia, and as well as explaining everything, told me that there was treatment, and that I wasn’t to blame for her condition. |
| What practical things do you do to make your child’s lymphedema easier to manage? | Shoes are still a terrible challenge. When we have an emergency, especially with frequent upper airway infections, lymphangitis, among other health issues, the pediatrician always gives prompt advice. I recently discovered a neurological malformation, so I’m always on the lookout for every change, comment, complaint and/or behavior. |
| Do you involve or encourage your child in their own self-care, and how? | Luckily, my daughter is a very intelligent girl and we talked about the importance of always using compression, so we managed better by being able to count on variety: bandages, tailored flat knit socks and tape. She’s already able to put the tape on in a basic way and put the sock on when I’m not around to help. She is fully aware of the volunteer work she does with Abralinfe, and likes to encourage other children to take care of themselves. We always post videos or take part in video calls with a mother and child |
| What support functions (i.e. medical professional, patient association, school) has been the most helpful to you and your family? | There were two important moments: the first was meeting people with lymphoedema, and then other families of children with lymphoedema, which took away the feeling that I was alone fighting all this; the second moment was when we founded the Brazilian Association of People with Lymphedema and their Families, Abralinfe, in March 2022, as well as learning a lot about lymphedema and being able to manage my daughter’s care, I began to have many contacts with doctors and physiotherapists, which ended up increasing the network of support and information that helps my daughter, both directly and indirectly. |
| What advice would you give other parents who are at the start of the journey, just learning about the diagnosis? | Fortunately, many countries already have patient associations, so I think the first step is to get in touch with them, so that you have access to reliable information based on studies and scientific evidence about lymphedema, as well as access to events and the community. Supporting and strengthening patient associations is the best way forward, because they will represent you, your child, and all the people who need them in this fight; no one can make a change alone, and associations, without support and money, will cease to exist, even if they have volunteer workers, who are usually just the few managers, and who are also people like us, family members and patients. LEAVE THE WHATSAPP GROUP AND STRENGTHEN YOUR COUNTRY’S ASSOCIATION! |
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