{"id":7399,"date":"2024-01-14T17:10:57","date_gmt":"2024-01-14T17:10:57","guid":{"rendered":"https:\/\/www.nf-patients.eu\/magazine\/?p=7399"},"modified":"2024-03-02T14:42:04","modified_gmt":"2024-03-02T14:42:04","slug":"heroine-of-the-month-2","status":"publish","type":"post","link":"https:\/\/www.nf-patients.eu\/magazine\/heroine-of-the-month-2\/","title":{"rendered":"Heroine of the Month"},"content":{"rendered":"\n

In this edition, we will present an inspirational woman, who suffers from NF2 and lost her hearing due to a vestibular schwannoma. Nevertheless, she fights for a normal life every day: Joanne Ward<\/strong>.<\/p>\n\n\n\n

Joanne Ward is a 53-year old woman from Nottingham, U.K., who was diagnosed with Neurofibromatosis Type 2 when she was 29. Due to her vestibular schwannomas, she has lost her hearing over the years. Nevertheless, she is a proud mother of two young boys and lives a mostly normal life.<\/p>\n\n\n\n

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Hi Joanne, thank you for your time. First question: When were you diagnosed with Neurofibromatosis Type 2?<\/strong><\/em><\/p>\n\n\n\n

I was diagnosed with NF2 quite late, in September 1999, at the age of 29. I didn’t really have many symptoms that pointed to it. I had a slight hearing loss in one ear for a few years and had a couple of falls, but nothing really pointed to NF2 at all. I had never heard of it before the diagnosis. I was a spontaneous mutation, so there was no family history of NF2. I thought nothing of it when I visited the doctors. Brain tumours and things like that happen to others, don’t they? It was only after I saw the neurosurgeons and they put all of the little pieces together. Looking at the MRI was quite a defining moment. I remember it like it was yesterday, being told about the tumours and NF2.<\/p>\n\n\n\n

Did the doctors know much about the disease?<\/strong><\/em><\/p>\n\n\n\n

I was lucky, the neurosurgeons and ENT (ears, nose and throat) specialists at my hospital seemed to know about NF2 and appeared to be quite informed. Many years later, I met two other NF2ers who attended the same hospital clinic. I now see them as very good friends. But this also proved that the doctors were aware of the condition. <\/p>\n\n\n\n

Since 2010, we have the national NHS NF2 service in England that looks after all NF2 diagnosed patients and consists of four specialist centres (in Manchester, Oxford, Cambridge and London). This can involve extensive travel so they also have “satellite” clinics, where the NF2 teams can attend more local hospitals, if needed. The NF2 teams consist of NF2 specialist nurses and consultants within a multi-disciplinary team. This means the clinics may be attended by ophthalmology, physios, geneticists, psychologists as well as neurosurgeons and ENT consultants or any other relevant discipline \u2013 Each centre decides their own team. This is much better, because as NF2 patients we get access to the doctors we need and we know that those specialists are fully aware of NF2. And it means that we can get quicker referrals to the services we need.<\/p>\n\n\n\n

When did you find out that there is a probability of becoming deaf?<\/strong><\/em><\/p>\n\n\n\n

At the time when the doctors realized I had Schwannomatosis, I already had a vestibular schwannomas. An emergency surgery followed five days later for my right-side vestibular schwannoma. They mentioned I would be deaf in that ear from that point on and that I would be likely to lose my remaining hearing over time. They suggested at the time to take some British sign language classes, also called BSL, in “preparation” for becoming completely deaf. They never really mentioned the chances of this happening, but more that it would happen. <\/p>\n\n\n\n

\"20230609<\/a><\/figure>\n\n\n\n

<\/p>\n\n\n\n

You have two young kids, are they affected by NF2?<\/strong><\/em><\/p>\n\n\n\n

I have two boys, the older one is 16 and has not gotten NF2. The younger one is 12, his name is Oscar and he has inherited NF2 from me. This again shows the 50\/50 chance of children of an affected person to get NF, too.<\/p>\n\n\n\n

When and why did you decide to volunteer at NF2 BioSolutions UK? How long have you been doing that? <\/strong><\/em><\/p>\n\n\n\n

I have been involved in the UK arm of NF2 BioSolutions (an NGO that advocates for NF2) since 2020, when a small group of us got together to form the NF2 BioSolutions UK charity. It means we can raise funds in the UK and benefit from gift aid on donations so that there is more money in the pot for research. My drive for doing all this is my youngest son Oscar. NF2 can be a cruel and debilitating condition and I cannot sit by and let NF2 take his future, so he is my drive to make the world a better place for those with NF2. There have been many medical advances since my diagnosis back in 1999. I hope that in my lifetime I’m able to see better advances towards treatments that offer better quality of life and hopefully also a cure for NF2. Oscar already has mobility problems, a cataract (a clouding of the lense of the eye) and hearing loss. He has been on Avastin to control tumour growth since March 2023. He deserves a better future that is free from the fear of where the next tumour will grow and what nerve it will take.<\/p>\n\n\n\n

What do you love to do in your free time? What keeps you going on bad days?<\/strong><\/em><\/p>\n\n\n\n

We love to travel as a family and go on adventures while it is still possible. We also have a caravan and sometimes we “escape” and drive to the coast. That is really my “happy place”. The boys are also very big football fans and sometimes I get to go to the matches with them. They also keep me busy with training and playing for their local team. I am also quite a keen gardener and I like growing my own fruit and vegetables, so in spring and summer you will probably find me in my garden. Sometimes, I even sell plants to raise funds for NF2 research.<\/p>\n\n\n\n

For my mental health, I like to take walks in the local area because it is another good way of getting out and about, fresh air is good for the soul and mental health. And lastly, I really enjoy cooking and baking. So, I have several activities that help when I’m feeling low and I can really recommend that. <\/p>\n\n\n\n

Thank you so much for the interview!<\/strong><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

In this edition, we will present an inspirational woman, who suffers from NF2 and lost her hearing due to a vestibular schwannoma. Nevertheless, she fights for a normal life every day: Joanne Ward. Joanne Ward is a 53-year old woman from Nottingham, U.K., who was diagnosed with Neurofibromatosis Type 2 when she was 29. Due to her vestibular schwannomas, she has lost her hearing over the years. Nevertheless, she is a proud mother of two young boys and lives a mostly normal life. Hi Joanne, thank you for your time. First question: When were you diagnosed with Neurofibromatosis Type 2? I\u2026<\/p>\n","protected":false},"author":7,"featured_media":7472,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"advgb_blocks_editor_width":"","advgb_blocks_columns_visual_guide":""},"categories":[1],"tags":[],"acf":[],"author_meta":{"display_name":"magazineditor","author_link":"https:\/\/www.nf-patients.eu\/magazine\/author\/magazineditor\/"},"featured_img":"https:\/\/www.nf-patients.eu\/magazine\/wp-content\/uploads\/2024\/01\/heroines-300x169.jpg","coauthors":[],"tax_additional":{"categories":{"linked":["Uncategorized<\/a>"],"unlinked":["Uncategorized<\/span>"]}},"comment_count":"0","relative_dates":{"created":"Posted 2 years ago","modified":"Updated 2 years ago"},"absolute_dates":{"created":"Posted on 14\/01\/2024","modified":"Updated on 02\/03\/2024"},"absolute_dates_time":{"created":"Posted on 14\/01\/2024 17:10","modified":"Updated on 02\/03\/2024 14:42"},"featured_img_caption":"","series_order":"","_links":{"self":[{"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/posts\/7399"}],"collection":[{"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/comments?post=7399"}],"version-history":[{"count":21,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/posts\/7399\/revisions"}],"predecessor-version":[{"id":7532,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/posts\/7399\/revisions\/7532"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/media\/7472"}],"wp:attachment":[{"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/media?parent=7399"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/categories?post=7399"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/tags?post=7399"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}