Rare Disease Day 2020
Today is the right day to raise awareness of rare diseases as it is ‘Rare Disease Day’ across the World. I live with an ultra rare genetic condition called Hypophosphatasia or HPP. A quote from an HPP support website says “ Every day with HPP makes 20 feet feel like 20 miles”. I can tell you that daily tasks can become lifelong challenges as pain and fatigue kick in. In addition to this you have times when the pain is so severe that all you can do is take to your bed and wrap yourself in as many heat blankets as you can find! Having said this when living with a rare condition you do learn to pace yourself so that you can join in activities and meet up with friends. Maybe you have to do things differently but there are still many joys in life.
My greatest joy and distraction from the pain is my painting. When I step into my studio and begin heating up the wax I immediately get a sense of calm but also excitement as I know I am going to create that day. I can lose track of time as I become engrossed in the process of encaustic painting. Using hot wax, heat guns and blow torches makes the room warm. The process itself is inspiring because the wax has a mind of its own as it melts. It has taken me many years of practice to control the medium. It is alchemy with fire and I am hooked! I am now selling my work internationally which is so thrilling as it is so special to know that people love my work but it also enables me to keep painting as the process is an expensive one. You can see a video of me working in my studio from this link.
There are two stories to tell here. One is about my artwork and you can find my art website at www.melaniewilliams.net and the other is my story about living with Hypophosphatasia and if you are interested you can see this at www.HPPandMe.com
Over the years I have had the opportunity to take part in a few awareness campaigns, the most recent being “I am Number 17”. This is a campaign to help the voices of those with rare diseases to be heard. We worked with 17 artists to create some amazing artwork which was exhibited in the Oxo Gallery in London in January this year. The exhibition will be travelling around the country over the coming months. I am also an ambassador for ‘Metabolic Support UK’ who are an amazing organisation for those with metabolic disease, families or their carers. I also am grateful for the support of Soft Bones UK. The ‘Rudy Study’ is also a wonderful resource for health care professionals, patients and researchers to join forces in the fight against rare and undiagnosed diseases in the UK. I am lucky enough to be part of this both as a person living with a rare disease but also on the patient advisory panel.
There are wonderful support groups out there in the UK and below is a list of links I have found useful on my personal journey with Hypophosphatasia.
If you live with or care for someone with a rare disease, share your experience on social media using the hashtag #IAmNumber17 to help us raise awareness in the UK.
#softbonesuk #metabolicsupport #hpp #hypophosphatasia #rudystudy #rarediseaseday #hppandme #ShowYourRare #rare #raredisease #genetic #tellyourstory