Diagnosed with Crohn’s disease in 2011, Emma Richards was no stranger to hospital appointments. So when the nurses looking after her became increasingly worried about her blood results, she assumed it was linked to Crohn’s. But following an appointment with a haematologist, in January 2013, at the age of 33, Emma was diagnosed with chronic myeloid leukaemia (CML).
In a state of shock, the week following her diagnosis saw Emma undertake numerous blood tests and sign up to trials of the drug imatinib – the ‘golden bullet’ drug that has been revolutionary in the treatment of CML.
Now, two years on, Emma continues with her treatment and has, with the ongoing support of her family and Leukaemia Care, learned to live with both chronic conditions.
Discussing her journey and the support provided by Leukaemia Care, Emma says:
“Being diagnosed with Leukaemia is very scary! Not just for me, but for my family as well. I have a husband and two children and I come from a relatively large family of seven girls.
“My family’s support has been fantastic and the support from Leukaemia Care has been crucial to helping us to deal with my diagnosis and ongoing condition.
“I now call the Care Line whenever I have any questions or need some advice. It’s great – the information and advice is always very honest and specific to you. But I haven’t always done that.
“The internet is so readily available and it’s tempting for people to go online and try to self-diagnose by looking up their symptoms. Even though I was already in contact with the nurses providing treatment for the Crohn’s disease when I was diagnosed, I couldn’t resist looking on the internet. But I quickly realised it can be a very scary experience.
“You don’t always get a true reflection and the information you find can be quite generic. You can very easily add two and two together and come up with 45.
“It’s also important to remember that the standard treatment and procedures available here in the UK can be very different to other countries, so unless you are reading advice that is specific to the UK, it won’t necessarily be relevant.
“Speaking to someone means you can go through all your questions in detail and feel safe in the knowledge that you are getting the right answers. It helps to put your mind at ease. The situation is stressful enough without worrying about incorrect information!”
It isn’t just Emma herself who found calling Leukaemia Care helpful. Her husband David, who Emma describes as her “rock”, also found some comfort in speaking to someone – both via the Care Line and at face to face events.
“My husband found talking to people who understood our situation really helpful. And it wasn’t just the Care Line – face to face contact at events organised by Leukaemia Care meant he could meet other patients and carers face to face.
“At one event that I had been speaking at, a man went up to David and commented that listening to me was just like listening to his wife. He spoke to David about how he had felt, to which David could instantly relate.
“For David, it was the knowledge that others were in a similar situation and seeing how they coped that helped the most.”
One of Emma’s sisters also contacted Leukaemia Care for advice after feeling helpless following the initial diagnosis:
“My sister Jenny felt that she needed to help in some way, but she didn’t know how, so she called the Care Line for advice. The advisor helped her to turn her feelings into action by signposting fundraising activities as a way she could help to make a difference.
“In 2013 Jenny did a skydive for Leukaemia Care, raising £1,500, and since then a team of us have done a wing walk to raise further funds.
“Neither myself, David or Jenny would have found this level of support by looking for advice solely on the internet. Picking up the phone is much more personal – a screen can’t give you comfort.”