During World Lymphoedema Week which took place March 5th to March 11th 2017 we did a facebook event to help spread awareness and to raise some money for L-W-O Lymphwhatoedema and LSN Lymphoedema Support Network. We got together with a few small home businesses who donated prizes for a mega raffle which helped raise some money for the charities. Along with product posts I posted some information on Lymphoedema as well as some of our experiences for people to share and help spread awareness, you will find those posts and videos below. it was a really great event but the work doesn’t stop there, now we have these posts online we are able to share them across social media not just in the awareness week but throughout the year as well. If you haven’t watched our story please do so here
When we joined Lymphoedema support network we were sent a pack full of information leaflets. This is taken from information for parents and explains a bit about the lymphatic system and Lymphoedema.
WHAT IS LYMPHOEDEMA?
☀ Gaynor Leech LWO founder explains
☀ More information can be found here.. http://lymph-what-oedema.com/the-lymphatic-system
Its lovely and sunny here today in Lancashire! Whats it like where you are?
We took the kids out to a local park to make the most of the lovely weather although we did get really muddy!!
Exercise and fresh air is really good for Lymphoedema, deep breathing and exercise helps move the lymph fluid around the body, our kids love to be outside running around, our little girls Lymphoedema is in her hand so we try to do things to keep her moving it as much as possible, like squeezing a sponge in the bath, which she thinks is great!
You will find more information on cellulitis on the LWO website here http://lymph-what-oedema.com/cellulitis
How we care for Lymphoedema
More information from what i was discussing in my live video. How being a part of Nikken and building our wellness home has helped our little girl and her Lymphoedema. You can find the blog post i shared here Lymphoedema and Magnetic Therapy
This is the latest compression glove, its pink!! And matches her shoes that she picked out all on her own so we knew she would love this!
This is worn just during the day at the moment as we are still trying to get the right fit! The problem is trying to get a 2 year old to let you measure their fingers, hand and arm! Luckily we have very patient nurses and a fab compression garment company who are helping get it right! Another problem is once at the right size and the arm and hand is compressed helping the lymph fluid move and the swelling decreases which is great but for it to decrease further we would need a smaller glove each week. The hope is that over time as she grows the swelling will decrease then it will be much easier to manage and not as heavy for her which sometimes can affect her balance and tire her out more easily.
Any questions please do ask and please continue to share these information posts, we want the world to know Lymphoedema Exists!! And there is hope! Its such a scary situation not knowing and going months with not finding any medical profession who knew what they were talking about! There is so much unknown that sometimes it still can be scary but at least now we know we are not alone!
L-W-O Support Group
Gaynor Leech founder of L-W-O Lymphwhatoedema talks about the support group she set up for those living with Primary and Secondary Lymphoedema. This is the group that started our journey for answers. There is also a group for parents who have children with Lymphoedema. Please share this post we would like to reach people who may not know that there is this support! Any information about the closed support groups please get in touch!
Other Information on Primary Lymphoedema
I love this blog from another Lymphoedema Parent, her little girl has Primary Lymphoedema in both feet and is older than mine so its lovely to read .. HERE