Rare Disease Day 2020

Primary Lymphedema According to The National Organization for Rare Disorders: This disease has many subdivisions: congenital hereditary lymphedema,hereditary lymphedema, type I, lymphedema-distichiasis, lymphedema praecox, lymphedema tarda, Milroy disease, Nonne-Milroy disease. Hereditary lymphedema (according to N.O.R.D. affects females more often than males. The estimated prevalence of these disorders is 1 in 6,000 individuals within the general…

Little Lymphie Warriors: Mary and Elaine’s Journey

The forever bond of a mother & daughter fighting against Lymphedema “My mom was my anchor throughout my whole journey and still stands beside me today. It is hard on parents to watch their children in pain, and it is hard for children who try to stay strong for their parents’ sake. We have each…

Little Lymphie Warriors: Brylan & Brittany

Brittany Williams isn’t new the the world of Lymphedema, she has been fighting for almost 6 years. Because of both Brittany & Brylan’s effort’s- seeing the lack of care, help, answers or assistance in medical expenses & obtaining treatments that are crucial to our children’s daily life and future. In 2018, Brittany established the very…

Part 13: The ICG Lymphography & NLN Boston

Trying to post a year worth of events, friendships, Lymphatic science, research & revelations- is hard! Sifting through all the swirling information in my head I think is so important to share to the world of parents, caregivers and anyone interested to know can feel at times like an impossible feat! Each of our stories…

Part 12: Building our Lymphedema Toolbox and our 2019 Adventures

Spring 2019 was on the way… I now had a fresh 3 year old Cora Jean. 3 years and hopefully getting closer to answers. I decided to take it back to the basics– by combining research, training at Földi and tools and tidbits given to me from Cora’s various doctors and her Certified Lymphedema Therapists….

Dry Brushing & Our Little Lymphies

So- these past few weeks have been rough for this little family! By rough I’m talking… questioning-my-dwindling-sanity rough. It was the great sickpocalypse of 2020….our home was a mix of stir-crazy from wonderful Minnesnowtan weather, too much Frozen (no Cora for the 5 millionth time Frozen 2 is not on TV yet but I swear…

That girl has HUGE hands!!!

“That girl has HUGE hands!”- that statement…. it sparks anger in the very depths of my soul- my husband included. I’m not sure if anger is the best word. Sadness? Despair? I mean it’s just a statement right?! No… it’s the constant reminder wherever we go– we might act normal, happy and full of life…

Part 11: WAS ALL OF THIS FOR NOTHING?!

I had tried consistency for two solid months. As recommended Cora was to have: 12 hours a day of manual wrapping (up to 8 layers give or take to keep her hands softened) during these periods her fingers and hands were immobile. They recommended this for her sleeping hours. Cora wasn’t sleeping or would wake…

Part 10: Life After Földi Klinik

Arriving home Travel back felt honestly like a cake-walk compared to over a month an a half navigating Amsterdam, Switzerland and Germany in combination with our new experiences & conservative Lymphedema routine. Even during the hardest times- I knew how incredibly fortunate we were to even have this opportunity. To seek treatment on our path…