Causes and Diagnosis

1.Causes and Diagnosis (Discovery Bay) :

1. What is lymphoedema? How many children are affected?
   • Are there many children with lymphoedema?
2. What causes lymphoedema? Can it affect other parts of the body?
   • Can lymphoedema spread to other parts of the body?
3. Is lymphoedema genetic?
4. How is lymphoedema diagnosed?
5. Where can we find specialist lymphoedema care?
6. Can lymphoedema be prevented?
7. Can it get worse? Will my child be able to walk and play normally?
8. What triggers lymphoedema to worsen?
9. Can lymphoedema be cured definitively?
10. How can we ensure a smooth transition to adult lymphoedema care later in life?
11. What could have caused my child’s lymphoedema?
12. Can lymphoedema be prevented from progressing?
13. What changes should we expect as our child grows?
14. How will lymphoedema affect my child’s growth and development?
15. What is the long-term outlook for my child?
16. Could lymphoedema affect my child’s mobility?

Frequently asked questions awaiting replies:

• What kind of exams are necessary to diagnose lymphoedema?
• How do I recognise cellulitis?
• What is cellulitis and how do I recognise it?
• What kind of treatment is available for my child?
• What are the different type of treatments available for lymphoedema?
• When lymphoedema does not respond properly to treatments (e.g. bandaging) what can be done? Change technique?
• What can I do if the œdema does not respond to the treatment?
• Management of genital lymphoedema 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?
• As our first child has lymphoedema, how likely is it that any other children we have will also have the condition?
• We have one child with lymphoedema, how likely is it that we could get other children with lymphoedema?
• Where can my child get a diagnosis? (locally/nationally)
• What specialist should I see for a diagnosis of my child?
• What specialist should I see for treatment of my child?
• What are the different specialists that can diagnose and treat a child with lymphoedema?
• How can swelling in the pelvic floor and on the hip be kept down? and hips?
• I understand that lymphoscintigraphy may help us understand the cause of my child’s lymphoedema but will it help in what treatment he will receive?
• Risk of developing genital oedema What are the risks of developing genital oedema and what specialist can help?
• 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?
• At what age can the child have a lymphoscintigraphy?
• Since I have not found a genetic match, what tests could be performed to understand the nature of my lymphatic dysfunction?
• And assuming we can understand it, how much more effectively – compared to the usual and generic lymphoedema management practices – could the œdema be treated?
• Should I/my child get/can I get a genetic test for my child/me?
• What is the purpose of a genetic test?