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L-W-O Community

For families whose children live with Paediatric and Primary Lymphoedema

Welcome to L-W-O Community 4 Families

Author: Gaynor Leech Founder of L-W-O Community

 

Introducing our new Family Website for those families whose children live with Paediatric and Primary lymphoedema. If you have not been on our website before, welcome!  In 2015/16 I was repeatedly asked by members of our adult support group would I set up a children’s or family support group for those families whose children had been diagnosed with paediatric and primary lymphoedema.  First, let us take a step back, and see how we evolved, and grown into L-W-O Community.

In 2011 when I was diagnosed with lymphoedema, I was not told I had ‘secondary’ lymphoedema neither was I told there was a primary lymphoedema.  There was extraordinarily little information to find, most of it came from outside the UK via the internet and therefore I could not always confirm how accurate the information was. After lots of reading and research in 2013 I set up the L-W-O website together with a Facebook public page.  Have you visited our website?

 

L-W-O stands for lymph-what-oedema because when I was first diagnosed with lymphoedema, I repeatedly said, “Lymph What”?

 

The remaining part of 2013 and early 2014 I was encouraged by supporters to set up a private adult support group on Facebook, this was outside my comfort zone and at the time I had no direction and no or very little social media skills.  In the first month 37 people joined the support group and it was only then, I learned that there was a primary lymphoedema.  This was a steep learning curve and for the following months and years there was a lot more reading, researching, and writing. There were many times when I felt angry at the lack of information available to someone who was diagnosed with lymphoedema. However now as a patient advocate, I am passionate about raising awareness of lymphoedema and supporting in any way I can those who are living with lymphoedema.

 

 Lymphoedema can be managed and treated.

 

Late 2016, and I was still being asked by parents to set up a children’s support group.  Nothing was further from my mind; I had just lost my Mum and four weeks to the day that my Mum died my cousin died after an 11-year battle with breast cancer that, by that time, had ravaged her whole body. The night before my cousin’s funeral my great granddaughter was born so great elation and despite all the sadness of the previous four weeks... 

 

We were ecstatic

 

The following morning hubby and I travelled to Oswestry.  This was the second family funeral in the space of four weeks especially difficult for my Aunt because she had lost her sister, my Mum, and now her only child.  My cousin’s funeral service was held at the Church that generations of our family have attended including weddings, christenings and funerals then on to the crematorium at Pentrebychan Nr. Wrexham. I kept saying to my hubby I could not understand why we had only two photographs of our great granddaughter sent to my mobile phone.

Why was my daughter-in-law not sharing more? Why was she so quiet? Several times my hubby said his usual stock answer “you are imagining things”. Then just as I was about to walk into the crematorium my phoned pinged and my daughter-in-law had sent a message “Has your funeral finished yet? Please phone me when you can”.  The next hour and a half of that time, is a bit of a blur, but I do remember hubby saying, “don’t ring her until you get back to Oswestry for the wake.”

Our lovely daughter-in-law has kept us informed and included us in all aspects of hers and my sons life including their six children for the last 20 years, I hear about the bad things and the good things and I am eternally grateful that she is part of our family. With a deep breath I rang her. She started the call with her usual when something is up “I wanted you to hear this from us before someone else tells you.  You know that lymphie thingy you have.  Ezmae-Kate has been born with it, but it’s not like yours it’s all in her face.” 

 

Me,totally and utterly speechless

 

Suddenly all the procrastination of starting a children’s support group had disappeared and after various discussions, one of our parents agreed to be joint admin with me and the group was launched on January 1st, 2017.  It has been slow to grow however, we have 92 members.  I think this is where my true understanding of lymphoedema has come from as I said at the beginning of this piece, I did not know anything about lymphoedema, I had to learn about secondary lymphoedema then suddenly there is primary lymphoedema which is not just one disease and suddenly I am having to learn about lymphatic malformations.

Over the last three years I have often thought that the children’s group needed its own website.  Up until now there have been two pages on our main website however the time has come to publish a new website.  The children’s support group has had several name changes but while searching for a domain name for the website I decided it needed to be about families and their experiences therefore, both the support group and website have the same name. When lockdown in 2020 pushed us into self-isolation it was time to make our new website a reality.  It has taken 18 weeks to get this new project off the ground and like all websites...

 

We will grow, and the work will be ongoing

 

You might be noticing that it looks different from our normal branding, the logo is still the same and it will be very much a part of the L-W-O Community our ethos is the same.  The new design has new features, new content and is more colourful. I hope you will like what you see, and that you can easily find information.

Looking for some help with a specific issue?  Use our contact page and I will see how I can help or where I can signpost you too.  The same terms and conditions and other policies apply to all our websites, and social media as does our Medical Disclaimer which you will find at the bottom of every page on both our websites.  I look forward to hearing from you when you are ready.

On our family’s website I will have some good tips and advice for coping with your child’s lymphoedema.  I will be inviting parents or interested parties to write a blog and I sincerely hope our families will write blogs telling us their stories and experiences. If you would like me to write about a topic I have not thought of, please,  Send me an email.

Are you on social media? While I cannot discuss personal issues in the public forums I or other parents can chat on our private support group so please come and join us. I do often post links to great articles on our Facebook Community page which is our public forum so if you prefer not to join one of our private support groups give us a like so that you can follow what the L-W-O Community is doing. I would love to have you like our Twitter page or follow me on LinkedIn links are in the footer of this page and all our web pages.

When you see friends or other families who have paediatric, primary, or secondary lymphoedema, that need support I would appreciate you suggesting they check out this website or join one of our private support groups. 

Referrals are always welcome.

 

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