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On the 30th July 2016 I was featured in the Liverpool Echo to talk about my condition Neurofibromatosis, NF causes tumours to grow along my nerves and causes other problems including nerve damage, joint pains and skin growths, learning problems and other difficutlites. I got diagnosed when I was two years old and ever since then I have spent my whole life in and out of hospital this meant me missing school a lo to attend hospital appointments and have regular surgery. When I was eight years old I got diagnosed with Scoliosis which is curvature of the spine and this meant I needed to have major surery which took 10 hours but this would mean I would stop growing because my spine was being fused so I haven't grown an inch since I was eight but hey ho at least my clothes and shoes are cheaper!
I struggle on a daily basis some days I cant get out of bed due to severe pain and I am on a lot of medication to try and help me and I am in constant pain 24/7 and use crutches and a wheelchair and I go to 8 different hospitals up to 8 times a month but I always try my best to do everything my self and help others too. As well as suffering from NF and Scoliosis I also suffer from these condiions whch I will tell you about:
Kyphosis - Kyphosis is curvature of the spine that causes the top of the back to appear more rounded than normal. Children with kyphosis may be able to be treated using non-surgical methods, such as bracing, to limit the progression of kyphosis as they grow. Treatment for mild kyphosis may not be necessary. Kyphosis rarely requires surgical treatment. It's only needed in some severe cases to correct the curvature of the spine.
Depression - Depression is more than simply feeling unhappy or fed up for a few days. Some people think you can just 'snap out of it' but its not that easy Talking therapies, such as cognitive behavioural therapy (CBT), are often used for mild depression that isn't improving or moderate depression and medication can be given as well.
Aniexty - Anxiety is a feeling of unease, such as worry or fear, that can be mild or severe. Psychological therapy – such as cognitive behavioural therapy (CBT) can also help and so can medication.
Vertigo - Vertigo is a symptom, rather than a condition itself. It's the sensation that you, or the environment around you, is moving or spinning. Vertigo is commonly caused by a problem with the way balance works in the inner ear, although it can also be caused by problems in certain parts of the brain. Some cases of vertigo improve over time, without treatment but if severe then medication will be given.
Insomnia - Insomnia can be triggered by a number of possible factors, including worry and stress, underlying health conditions, and alcohol or drug use. Some people develop insomnia after a stressful event, such as a bereavement, problems at work, or financial difficulties if its severe then medication will be given for a short period of time to regulate the sleep pattern.
Supraventricular Tachycardia - (SVT) is an abnormally fast heart rate of over 100 heartbeats a minute. Episodes of SVT can last for seconds, minutes, hours or even days, in rare cases. Most episodes of SVT are harmless and don't last long and settle on their own without treatment but in some cases then medical treatment will be needed injections of medication or an electric shock treatment called cardioversion can usually help to stop it.
Osteoporosis - Osteoporosis is a condition that weakens bones, making them fragile and more likely to break. It develops slowly over several years and is often only diagnosed when a minor fall or sudden impact causes a bone fracture. Most people will be put on medication to strengthen the bones and a person would be monitored regularly.
Rheumatoid Arthritis - Rheumatoid arthritis is a long-term condition that causes pain, swelling and stiffness in the joints. The symptoms usually affect the hands, feet and wrists.
The main treatment options include:
Medication that is taken in the long-term to relieve symptoms and slow the progress of the condition.
Supportive treatments, such as physiotherapy and occupational therapy, to help keep you mobile and find ways around any problems you have with daily activities.
Surgery to correct any joint problems that develop.
So lets get back to my TV experience, once that newspaper was published I got in touch with ITV news and showed them my article and they said they would love to do a story about me so on the 16th August 2016 I got interviewed for ITV Granada Reports news, it was so much fun! I wore my Everton top (of course) and later that day it was put on TV. I loved bein filmed so much I decided to look into other TV work so I found an application form for Jeremy Kyle Emergancy Room so I applied for that and I got accepted. I was so over the moon and a few weeks later I went down the studio to get filmed for it and it was amazing I had such a great time, I had my own dressing room with a couch, TV, shower and toilet, sadly I wasn't allowed to wear my Everton top due to advertersting on my shirt boooo hooo! but I couldn't help but give Jeremy stick for being a West Ham fan but he was so nice and he told the team he was really looking forward to meeting me because I am the best LOL. Then after that filming the Liverpool Echo did another article about me to say I got filmed for the show and to tell people to look out for me.
Since doing filmin for Jezza I got in touch with the new TV channel called 'Made In Liverpool' and I spoke to them and they was very interested in doing a story with me so of course I wore my Everton top again and now when I leave the house I always have people coming to me saying how amazing I am and how good it is that I want to spread awaressness about the condition to help others like me and help other people understand what I go through. Here are a few pictures I have got to show you from my TV interview.
I really hope you have enjoyed reading my short story thank you so much for taking the time to read it.
The following user(s) said Thank You: The Brain Charity
Thank you for taking the time to share your experiences with us. Your story will inspire many to overcome personal obstacles and I'm sure those sharing your diagnoses will be hugely grateful for your contribution. Sometimes just finding someone who shares your experiences is the biggest challenge. You deserve to feel very proud of yourself for the way you deal with everything. Always hold onto your sense of humour - worth it's weight in gold!
On 7th December in your honour, neurofibromatosis will feature on our Facebook page. Congratulations on all your achievements and we hope to hear from you again soon. Well done from all staff and volunteers at The Brain Charity.