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For families whose children live with Paediatric and Primary Lymphoedema

Successful First Month

When you start a new project there is always that question “Have I done enough?”, even though you know you have put hours into the research and presentation there are always anxious moments.  With our new family’s website launched on 31st July 2020 there was no waiting with bated breath the hit was instant everyone has been truly kind.

There are individual websites/blogs personally dealing with how a family cope with a lymphoedema diagnosis for their child but I believe our website is the first of its kind in the UK where we look at every aspect of living with lymphoedema or lymphatic malformations from a family viewpoint.  Not everyone can understand all the medical jargon used when a child is diagnosed with a lifelong condition like lymphoedema and my aim is to simplify the language and provide useful tips for self-care and wherever possible signpost to a respected source within the lymphoedema community.

We know when a child is diagnosed with a lymphatic malformation that the parent/parents feel helpless and isolated.  They often blame themselves and spend time worrying could they have done anything different through their pregnancy especially when there has been no family history.  Then there are the families whose lymphoedema is hereditary which adds more problems for the family circle.  Our aim with our family support group and this family website is to provide information, support and encourage families to become their own advocates.  The website will complement our family group and we will be able to provide more information and tell the stories of both the parents and the children.  As our understanding of Paediatric and Primary Lymphoedema (PPL) develops we hope to give parents and guardians the tools to be able to manage and self-care for their children living with this condition.

We are also producing short videos to compliment the family’s website like the one below.

 

My Child has Lymphoedema

 

 

 

As a direct result of launching the website there is a new families Twitter account @LWO4families the Twitter account has 27 followers.  The membership of the Families Facebook support group is 103 and 95 of those are families, the other members being patient advocates or health care professionals.  The membership of the families support group is largely from the UK however we have a growing membership from Australia, Europe and the US.  In addition to this, the website has received 2500 plus viewings in the first month.

There is a great deal of work to do and like most websites this will be an ongoing project most of the page titles are now in place and the topics will be expanded in time. Thank you to our members, followers and supporters who have encouraged, supported offered advice and suggestions for this new website.  I would also like to encourage our members to tell their story so that we can publish those in our blog because for each story we publish there will always be an element that will help another family.  If you would like us to publish your story please email me to have a chat at: lymphwhatoedema@gmail.com

This is what one of our parents said about LWO4families:

 

This is great. Thank you. It can sometimes feel like a bit of a lonely journey on an untrodden path, so it feels good to make links with others.”

We love referrals so if you know of a family whose child has lymphoedema or a lymphatic malformation and is looking for support from other families in the same position please introduce them to us they can join our support group at:  https://www.facebook.com/groups/lwocommunity4families they will need to answer two simple security questions and then they can join other parents who are in a similar position.

 

 

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