Myelopathy.org

Myelopathy.org

5/31/2025, 9:23:49 AM

🚶‍♀️ Miles for Myelopathy Spotlight ⏳ Only 1 day left! 👩‍🦳 Trish Hare, 57 🌞 Sunny Eastbourne “Like many others, I struggled to get a diagnosis — at first trying to manage my early symptoms alone. I started going to the doctor in 2018, but my symptoms were dismissed as low vitamin D, poor posture, perimenopause, or a shoulder impingement. It wasn’t until 2021 that I finally had an MRI of my cervical spine, which showed compression. I underwent ACDF surgery in Dec ’23, but unfortunately, it hasn’t resolved the issue. I still have compression and am now waiting for a second opinion on the next surgical step. I’m supporting Miles for Myelopathy because I want to raise awareness — even helping just one person avoid delays that could lead to permanent damage would be worth it. I’m also passionate about supporting this charity’s vital work — from research to the incredible support offered through the helpline.” 💬💛 🔗 https://www.justgiving.com/team/milesformyelopathy25 #MilesForMyelopathy #MyelopathyAwareness #DegenerativeCervicalMyelopathy #TeamDCM #MyelopathyMatters #SupportHelen 🧡

Myelopathy.org

5/30/2025, 1:17:07 PM

🚶‍♀️ Miles for Myelopathy Spotlight Only 1 day left! Name: Esther Martin-Moore Age: 52 Location: Lincoln Campaigns like Miles for Myelopathy are vital because they raise awareness about a condition that is often underdiagnosed and misunderstood. Myelopathy, a spinal cord disorder, can lead to permanent disability if not recognised and treated early. By promoting education and encouraging early detection, these campaigns help improve outcomes for patients and support ongoing research and advocacy efforts. They also foster community spirit, offer support, and give a voice to those affected by the condition. 🔗 https://www.justgiving.com/team/milesformyelopathy25 #MilesForMyelopathy #MyelopathyAwareness #DegenerativeCervicalMyelopathy #TeamDCM #MyelopathyMatters #SupportHelen 🧡

Myelopathy.org

6/6/2025, 8:03:43 AM

Referred for Consultant-Led Treatment for DCM? You Have a Choice. When it comes to where you receive care for Degenerative Cervical Myelopathy (DCM), you do have options — and we’re here to help you understand them. Our helpline team can guide you through your rights, explain your choices, and support you if you weren’t offered one. 📞 Call us: 0300 102 0079 🕛 Mon–Fri, 12:00–1:45 PM 💬 Leave a message if we’re busy — we’ll call back ASAP ✉️ Or email: [email protected] The Myelopathy.org Helpline is an official service of the charity. However, some helpline volunteers may also support the community in other ways outside of this service. Any conversations held outside of the helpline are personal and do not reflect the views or positions of Myelopathy.org.

Myelopathy.org

6/2/2025, 9:58:41 AM

🧡🧡 Nurse. Patient. Advocate. Michelle’s powerful journey with Degenerative Cervical Myelopathy (DCM) took her from the clinic to the stage at the Royal College of Nursing conference. She shared her story with honesty and courage — reminding everyone that DCM can happen to anyone. Some of the Myelopathy.org team were there too, proudly supporting Michelle and raising awareness of this life-changing condition among frontline clinicians. 📖 Read her blog: 🔗 https://myelopathy.org/sharing-my-dcm-story-at-the-rcn-conference/ #MyelopathyAwareness #FacesOfMyelopathy #PeopleWithDCM #DCMWarrior #SpinalCordInjury #RCN2025 #NursesWithDCM #InvisibleIllness #MyelopathyOrg 🧡

Myelopathy.org

5/28/2025, 1:23:38 PM

Miles for Myelopathy Spotlight: Helen Hornby – Gloucester, UK 🧡 Only 4 days left to support Helen and the team! “Most of us know the struggle to get a diagnosis for Myelopathy. I spent years going to the GP with neck and shoulder pain. It wasn’t until my symptoms worsened and I saw a fourth GP—who had a musculoskeletal interest—that I finally got an MRI and had urgent surgery. If only GPs were more aware of the symptoms of Myelopathy, my diagnosis might have come earlier. I might not be left with so many lasting issues. I joined the Miles for Myelopathy team to raise funds—but just as importantly, to raise awareness. Together, we can help medical professionals and the public recognise this underdiagnosed condition.” – Helen Hornby 👏 Let’s support Helen and help change the future for people living with Myelopathy. Donate or share today: 🔗 https://www.justgiving.com/team/milesformyelopathy25 #MilesForMyelopathy #MyelopathyAwareness #DegenerativeCervicalMyelopathy #TeamDCM #MyelopathyMatters #SupportHelen 🧡

Myelopathy.org

6/4/2025, 9:05:52 AM

📞 Need someone who truly understands DCM? We’re here. When you call the Myelopathy.org helpline, you’ll speak with someone who gets it — someone familiar with the daily challenges of living with Degenerative Cervical Myelopathy. They can share practical tips, real-life solutions, and an understanding ear. And because everyone is different, they can help you find what works best for you. 💬 Call us today: 0300 102 0079 Support is just a call away. The Myelopathy.org Helpline is an official service of the charity. However, some helpline volunteers may also support the community in other ways outside of this service. Any conversations held outside of the helpline are personal and do not reflect the views or positions of Myelopathy.org.

Myelopathy.org

6/9/2025, 12:23:20 PM

☕🌞 Coffee with Esther – June 2025 Virtual coffee, cream dreams, and a house sold in 7 days?! Join Esther as she shares the chaos, comedy, and courage behind her decision to move to Cornwall — all while managing the rollercoaster of living with Degenerative Cervical Myelopathy. There’s humour. There’s honesty. There’s even a shout-out to vegan sausage rolls. 🌱💬 And through it all? A reminder that joy, connection, and community matter more than ever. 💛✨ 👉 Read the full blog here: 🔗 https://myelopathy.org/coffee-with-esther-june-2025/ #MyelopathyMatters #DCMCommunity #FacesOfMyelopathy #CoffeeWithEsther #ChronicIllnessHumour #MyelopathyWarrior #SpoonieSupport #InvisibleIllness #MyelopathyAwareness #LifeWithDCM #HealthAndWellbeing

Myelopathy.org

5/29/2025, 1:39:30 PM

🚶‍♀️ Miles for Myelopathy Spotlight: Only 3 days left Name: Gail Laurence Age 70 Location Devon UK My diagnosis took over two years, with medics attributing my symptoms to ‘old age’. My late retirement looked bleak as my family/friends and I had never heard of DCM. I’m a carer for my husband with vascular dementia. I gained so much knowledge from our support group but sadly the helpline hadn’t been opened in time for me. I have learnt that many of us can be helped enormously, providing we are diagnosed early enough. I spent the four months waiting for ACDF surgery, and removal of osteophyte, getting fit and losing a few pounds. Not everyone gets the opportunity to do that if diagnosis is not forthcoming early enough. I am supporting awareness of myelopathy and fundraising miles for myelopathy during May, to help with research and training. I learnt to swim aged 69 and am swimming my miles! I may need further surgery but I’m far better educated thanks to Myelopathy.org and the support group. I’m addition I was terrified at the thought of surgery, but it wasn’t anywhere near as bad as my mind had imagined. 🔗 https://www.justgiving.com/team/milesformyelopathy25 #MilesForMyelopathy #MyelopathyAwareness #DegenerativeCervicalMyelopathy #TeamDCM #MyelopathyMatters #SupportHelen 🧡

Myelopathy.org

5/28/2025, 7:42:01 AM

We know that living with Degenerative Cervical Myelopathy (DCM) brings with it unique emotional challenges, as well as physical ones. By recognising and addressing mental health concerns, you can enhance your quality of life and wellbeing. We're here to help. 💬 All you need to do it call us on 📞0300 102 0079. Remember, seeking support is a sign of strength. 💪 The Myelopathy.org Helpline is an official service of the charity. However, some helpline volunteers may also support the community in other ways outside of this service. Any conversations held outside of the helpline are personal and do not reflect the views or positions of Myelopathy.org.

Myelopathy.org

5/22/2025, 9:04:02 AM

🌟 May is Myelopathy Awareness Month 🌟 All month long, a dedicated team of individuals living with Degenerative Cervical Myelopathy (DCM) have been moving in their own ways to raise awareness and funds for Myelopathy.org 💪🧡 Here, Amal Bensaleh Ratmi, a retired paediatrician, shares why campaigns like Miles for Myelopathy matter so deeply to her: 🗣️ “DCM affected my life on many levels and ultimately led to my early retirement from a career that I loved and enjoyed greatly. I’m an avid advocate for better awareness and care for DCM because having encountered so many difficulties and frustrations during my years of suffering from this condition—while being a doctor—only tells me more about how the lack of awareness is affecting the lives of millions of others. Many cannot get a proper diagnosis or timely access to care and are left with long-term disabilities, even if they are lucky enough to receive the hope-restoring surgery at some point.” Let’s build a future where everyone with DCM is diagnosed early and