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Die Suche geht weiter- The search goes on


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INTERNATIONAL LYMPHOEDEMA FRAMEWORK- umfrage Kinder mit Lymphödem

Die meisten Forschungen sind auf English und ich bin froh dass the International Lymphoedema Framework eine Umfrage gestartet hat speziell für Kinder. Da gibt es noch einiges zu tun und es ist offensichtlich dass in diesen Bereich viel mehr gemacht werden muss.  Die psychologische und soziale Auswirkung für die kleineren und deren Familie ist ein wichtiger Aspekt.  Es wäre wunderbar wenn die betroffene Familien sich bei diese umfrage beteiligen würden, wenn auch auf English.  Zusätzlich wird weiter geforscht was Genitalödeme anbetrifft, aus eigene Erfahrung weiß ich das dieses Thema noch als Tabu gilt und einfach viele überfordert.  Schön zu sehen dass es in andere Länder weiter geht.   


LYMPHO NEWS

2019 has been an exciting year for the ILF. We have achieved many great successes in our ongoing efforts to improve the treatment and management of lymphoedema worldwide.

We would like to take this opportunity to thank all our affiliates, national frameworks, partner organisations and industry partners for your commitment during 2019. Without your engagement and support, our achievements would not be possible.

 

Children and young people living with lymphoedema – Quality of life tool

Lymphoedema is a very rare disease in children and young people that can make the young person feel that they are ‘alone in the world’. The ILF wants to validate a Quality of Life tool to give greater understanding of how this condition affects the life of the person who has it.

If you have a child aged 5-12 years or a young person aged 13-21 years who has lymphoedema their help in this would be very valuable. Please encourage them to answer the questionnaires by clicking the link below.

The questionnaire takes about 30 minutes to answer. Information about it can be found once the link has been accessed:  www.surveymonkey.co.uk/r/LYMPHOQOL

 

Genital oedema education needs

Genital oedema is a complicated condition that can cause physical, psychological and social impact. From prior research, we know that lymphoedema professionals do not fully appreciate the impact of the condition and have unmet educational requirements. A new ILF education project is aiming to further understand the educational needs and tools that we should be developing, from both patients’ and professionals’ perspectives.

The main phase of the genital oedema education survey was recently closed with a total of 666 respondents. The data will now be analysed alongside that from the focus groups which took place with experts from Wales, England, and the USA.

Ich danke den ILF Team für deren unermüdliche arbeit.