Glanzmann’s: A Parent’s Journey
Written by Annette Kellow, mum to Felix, 3
When my son Felix was born he was covered from head to toe in bruises. At first doctors weren’t sure why. After 5 days of thorough tests at London’s Great Ormond Street Hospital (GOSH), it was discovered that he had the bleeding disorder, Glanzmann’s Thrombasthenia.
Glanzmann’s, otherwise known as GT, is a rare, inherited blood clotting disorder, characterised by the impaired function of platelets. It is one of the lesser known bleeding disorders and incurable. As such, there is no established regular treatment to keep the bleeds at bay.
In his first year I was incredibly worried about Felix as he bruised and bled so easily. Kicking his legs in his pram, playing with toys, scratching himself and even crying could bring on bleeds and bruises.
After he reached one, he started getting nosebleeds. This was the real start of the journey.
It necessitated trips, often on a weekly basis and usually in the middle of the night to A & E for canula access medication. Soon enough finding a vein proved troublesome and after harrowing scenes of trial and error it was decided he needed a port-a-cath for quick access.
I was incredibly nervous for Felix to have an operation but it had become necessary. And despite the many bleeds, the nurses at GOSH taught me how to inject Novo7 (the best coagulating drug available) which has been a godsend to have the control to stop bleeds and alleviate the trauma of the middle of the night hospital run.
Now Felix is 3, he has started nursery and wants to explore and play freely. The staff have all been GOSH-educated and are terrific at supporting him. But there is a fine line between letting him try new things, yet not causing a bleed. My heart is always in my mouth when he falls!
There was no family history of bleeding disorders so it was a real shock to discover that he had GT. At times I have felt scared, anxious and unsure. Yet as Felix has learned to understand he has a bleeding disorder, it is he who has picked me up on more challenging days, and happily tells strangers all about his medicine and care! Through all the injections, hospital stays and appointments he has become a confident and happy boy – and I have learnt more and more on how to handle his bleeding episodes.
In a bizarre twist of fate, I discovered a friend in America also has Glanzmann’s. There are only around 500 people in the world with the condition and doctors and family are completely amazed and baffled at how I could possibly know someone else with it, let alone be friends with them! My friend is very positive, happy and lives an active life. We talk every day and she always listens knowingly to my many questions. She has also given me so much hope that my son can still live a full and wonderful life, even with Glanzmann’s as his constant opponent.
You can read more about GT in our fact sheet.
There may also be new treatment options for GT on the horizon. You can read our report here.