“I have a different story to tell of my late teenage years then most of my peers,” says Megan Abernethy-Hope.
The 20 year old from Bishop Sutton was diagnosed with a blood disorder known as ITP which saw her immune system destroying her blood platelets, leaving her body unable to clot blood and at risk of internal bleeding. The discovery of the disorder was life changing and Megan found herself in a world consumed with illness. The treatments for the disorder which included full capacity steriods, left the young aspiring model and performer physically and mentally altered.
“I lost so much weight, but my face was massive (swollen from water retention caused by the steriods), I didn’t even recognise myself when I looked in the mirror. The fatigue was terrible but it was the mental side effects of treatment, the repeated raising of hopes that this time it might work and then the crushing disillusionment when it didn’t that was the worst. Not being able to live my life, not going out, not socialising, being self-conscious of how I looked, falling behind at sixth form because of all the time off. It was tough.”
Megan was eventually diagnosed with clinical depression as a result of the struggle.
“I remember thinking: ‘great, so my body doesn’t work properly and now nor does my mind, what’s left?’”
In 2016, after completing her A-levels at Chew Valley School, Megan took the drastic medical decision to have her spleen removed in a bid to free herself from the effects of the disorder and the medications.
“I woke up from the operation and I felt better, it sounds mad but it was that instant. The splenectomy gave me hope,” said Megan.
Not only did it give her hope but blood tests a year on from the procedure show her platelet levels have now normalised. With her life back Megan is spearheading a campaign to help other ITP patients, who Megan identifies as ‘ITP warriors’, by funding research into advancing treatments and testing.
Whilst studying for a degree in Stage Management at the Bristol Old Vic Theatre School Megan is aiming to raise £100,000 to support her consultant Dr Charlotte Bradbury and her research team at Bristol Haematology and Oncology Centre in their study of ITP. The team are developing a tracer and blood scanning techniques that will enable them to identify suitable and effective treatments for the individual patients.
“At the moment treating ITP is a step ladder process,” explained Megan. “It is a case of trial and error trying different drugs until something works. Dr Charlotte Bradbury and her team are aiming to improve the stabilisation process and alleviate the side effects of treatments by ensuring that the medication given is the most effective for that person.”
Megan says that because ITP is rare and extremely unlikely to be fatal, funding and research into the disorder has been limited. Whilst other diseases like cancers have seen national and international fundraising campaigns ITP has been under-represented leaving sufferers with little support or information. She is now aiming to change this.
And she is already well on her way to reaching her £100,000 target. Meg’s ITP Warriors campaign has already raised £63,000 thanks in large part to the efforts of Keynsham based company Dribuild, who raised a staggering £53,000 for Megan’s cause.
“Dribuild were looking for a charity to support for 2016, and I was invited to pitch my campaign to them. I had to go in there with my business head on and make my presentation. Then a few weeks later they called and said they had chosen to support us.”
But Megan couldn’t anticipate how much Dribuild would achieve.
“They organised an amazing day at Bath Racecourse, which raised the best part of £30,000 in one day, then they held a series of other events including a sponsored walk of Hadrian’s Wall and a charity golf day. I was amazed by everything they did and how much they raised.”
On top of the contribution from Dribuild Megan herself is raising money through various events, whilst her dad’s company Low Carbon Exchange have raised £5,000.
“I want to have raised £100,000 by the time I finish university,” said Megan. “I am hoping that next year I can take part in the Tough Mudder challenge, which would be a real achievement as two years ago the idea of even going to watch it as a spectator would have been unrealistic so to actually take part would show how far I’ve come.”
Megan says that funding improvements in ITP treatment means a great deal to all ITP patients.
“If it can get rid of those six or ten weeks of full capacity steroids that would be amazing. That would have changed everything for me, the weight loss, the changes to my appearance, the tiredness, the loss of school time. It would make a real difference.”
To help Megan raise funds for ITP research donate at www.justgiving.com/fundraising/ITPMeg