Laura is a member of the society and, like far too many of us, waited several years before receiving her diagnosis. We interviewed her to find out more.
Why do you want to be a representative at the Miss Yorkshire Competition for the PA Society?
“I want to represent the Pernicious Anaemia Society because a lot of finalists choose to be sponsored by Beauty Salons, Boutiques and so on, yet this is not necessarily a meaningful sponsorship. How can I represent a Beauty Salon or a Boutique, when they aren’t things that I am passionate about? Am I really going to help them promote their company? Probably not.”
“The Pernicious Anaemia Society is a different story. I have suffered immensely with my condition, experienced difficulties that are not the norm at such a young age and can completely support the aims of the charity. One of the main aims of the charity is to improve the treatment plan for those suffering with PA by finding out why some people with PA require more frequent injections. At the moment, there are thousands of sufferers who are still struggling terribly with their symptoms despite being provided with their 3 monthly injections. For a lot of us, this is not frequent enough – myself included.”
“If being sponsored by the PA Society means promoting the charity, helping others with PA and coming closer to improving the treatment plan for PA sufferers – not only is it a win for ME and for the charity, it’s a win for the thousands of others who feel they are not receiving the treatment that they need to function”.
How were you diagnosed?
“In the past, I was very ashamed of who I was. I suffered with my mental health, made an attempt to end my life aged 15 and was admitted to a low-secure unit for young people. I suffered bullying for this, which affected my confidence in the long run. I was very lethargic for a teen, and really struggled to pay attention during lessons. I was so surprised when I passed all of my GCSEs with grades A-C because I really did struggle to pay attention.”
“When I left school and grew older, it only got worse. I was now extremely tired, irritable, my concentration span worsened, my depression grew deeper, and I began to display physical symptoms. I suffered immense itching at night, my feet swelled up regularly, I developed a scalloped tongue and my legs were covered in bruises all the time. I seemed to catch every illness that was going around and would regularly develop infections. It even got to the point where I really struggled to perform tasks I was once good at, my manager sat me down and was concerned as to why I was struggling to do my job when I was once great at it.
I began forgetting everything – leaving the hob on overnight, letting the bath over-run, losing everything because I forgot where I had put it, and eventually having no recollection of meeting people, forgetting names of very close friends and so on. ”
“People kept telling me they were worried, and I began to worry too. I went to the doctors and told them all of my symptoms, they carried out a blood test and phoned me to tell me I had Pernicious Anaemia and I would need to come in for three-monthly shots of B12 for the rest of my life. I felt relief to know what had caused years of what had caused the years of feeling down (a lot of the time for no reason) and looked forward to my loading doses.”
“After receiving my loading doses of B12, everyone around me pointed out how much more energetic I was, how much I was on the ball and seemed happier and more positive in general. I felt on top of the world and thought I would continue this way. Before long, I felt back to square one. I asked the doctors if I would be able to make my injections more frequent as I was feeling unwell again and was told that it would not be a possibility.”
“I could not bear the way I was feeling, and so I found ways of sourcing ampoules of Hydroxocobalamin in order to self-inject. I feel better doing this than waiting three months, but I wish I could have been given guidance by a nurse or a doctor on how to do this. Sometimes I am too scared to do my own injection and it would have been nice to have it explained by a medical professional so that I felt more comfortable doing this, but unfortunately there is confusion amongst medical professionals that they should discourage us to do this”.
Are you still suffering from the symptoms?
“Yes. I still suffer with them and sometimes I have my down days. Sometimes I do not make any sense to others around me and I cannot pay attention. Only recently a friend of mine tried to reminisce with me about memories from our teens and on several occasions I had to explain that I had no recollection of those events. I was sent to A&E by my GP earlier this year because they were concerned I may have had a stroke due to a weakness and numb feeling down one side of my body (this was after stopping my injections for a period of time because I was told not to have any) as it turns out, these symptoms are most likely a result of nerve damage caused by the condition over the years.
“Despite the fact that it still affects me, I have found a way not to let it impact my life as much as before. I can explain to others why I am the way I am, and I can really relate to others who suffer with the condition. I am not letting this disease control my life and I would like to turn a negative into a positive by sharing my story and supporting the charity. I want to be the best that I can be, taking part in the Miss Yorkshire competition is a way of proving to myself and others that I can succeed. I want to set an example to others and show them that you don’t have to let the difficult elements of your life consume you”.
How has PA impacted on your everyday life?
“PA has impacted my life very negatively in the past but I am determined to be grateful of my experience with the condition as it will enable me to help others and to help the charity. I will now be working with the PA Society, helping them raise money and Martyn will be helping me to set up of a support group in my local area”.
In the meantime you can help Laura raise awareness of Pernicious Anaemia and the Society by text voting for her: send MISSYORKSHIRE08 to 63333. Texts cost 50p and each number can text up to 30 times per day. Voting closes at 12 noon on Saturday 16th June.