Living well with lymphoedema

Frequently asked questions awaiting replies:

• What measures can I take to help prevent infections for my child?
• What measures can I take to help prevent infections for the child?
• What is MCT (medium-chain triglycerides) diet and how does it work?
• Can we get reimbursement for compression garments?
• What kind of treatment is available for my child?
• What are the different type of treatments available for lymphoedema?
• What exercise can my child do/is there some exercise that can make it worse/better?
• What physical activities are recommended for a child with lymphoedema?
• Questions on made to measure/orthopædic shoes…how and where to get them (application process)
• Management of genital lymphedema
• Are there any support groups for parents of children with lymphoedema?
• Are there any support groups for children with lymphoedema? Online/locally?
• Surgery for children – what age is appropriate (is there a too young stage?)
• What kind or surgical options are available and at what age is it appropriate?
• How can we get supplies of hosiery when our child needs it?
• Where can I buy clothes that will fit my child and that are age-appropriate?
• How can we ensure schools understand our child’s condition?
• How can we help our child who is being bullied at school because of the hosiery/shoes that he wears?
• My child does not always want to wear their compression garments, is it ok to have “days off”?
• My child does not always want to wear their compression garments, is it ok to have “days off”?
• When is it time for my child (at what age) to be involved in their own care? Take on compression garments by themselves….skin care etc.
• At what age can the child begin to take on some of the self-care activities such as skin care?
• Mental health support available (where/what)
• What kind of mental health support is available and how will I know when the child needs it?
• How can I deal with other peoples opinion and “good advice” about my child’s lymphoedema
• How can I manage with other peoples opinion and “good advice” about my child’s lymphoedema
• How often should elastic stockings be replaced/changed?
• How many garments does the child need and how often do they need to be changed?
• Given the natural reticence of young people to treat themselves methodically, what treatment/aid is most appropriate to be intransigent with them?
• How can we motivate a teenager to be more involved in their treatment?
• Can the shoes provided by the hospital be more fashionable?
• Why are specialist services so far from our local area?
• What is a specialist centre and where can I find it in my country?
• What kind of food is better or worse for the lymphedema? (especially for those with need of MCT diet this is an issue as there is not much information on a practical level)
• Are there any diets suitable for those with lymphoedema, and are there food groups more or less beneficial or harmful?
• Why are there so few experts in the field of lymphoedema causing us to have to wait a long time for diagnosis?
• Why is lymphoedema not well known and why are there so few doctors who knows about it?
• Our daughter is unable to buy shoes in the High Street so they are made at the hospital. Can she have more than one pair at a time?
• Why are children not offered preventative MLD?
• Are there any foods/drinks that should absolutely be avoided?
• How to manage elastic stockings in children going to school who are not autonomous to manage it on their own?
• How can compression stockings be managed in nursery?
• Can we get reimbursement for made to measure shoes?
• How can we work with the nursery/school to identify problems with the compression garments?
• How can we work with the school/nursery to make them understand lymphedema and reduce the risk of bullying?
• Can we get funding for MLD?
• Can we get reimbursement for manual lymphatic drainage?
• Can we pay for extra hosiery if our child needs it?
• Should I/my child get/can I get a genetic test for my child/me?
• What is the purpose of a genetic test?
• What brands or shops/online stores sell shoes/clothes that is accommodating for lymphedema?