The Ann Conroy Trust is the UK's only educational organisation.
For those living with Chiari Malformation, Syringomyelia, and associated conditions
The Ann Conroy Trust is the UK's only educational organisation.
A message from the chairman.
Welcome! If this is your first visit then you have probably been diagnosed, recently, with syringomyelia or Chiari malformation. If so, we hope that you will find useful information that will help you understand something about these uncommon neurological conditions, with strange-sounding names, of which you had never heard before. If you have visited us before then we trust that, in our various pages, you will find additional material of value or general interest. We aim to help people “live with”, rather than “suffer from”, these unusual neurological disorders.
Please note, however, that we are a small charity, run entirely by volunteers, being a group of patients, healthcare professionals, their families and friends. We are not a government agency and are not part of the NHS. We endeavour to assist people living with syringomyelia &/or Chiari but, at times, may be unable to provide comprehensive support, for which we apologise. We will post additional notices, from time to time, relating to our various services on our news page.
Importantly, the Ann Conroy Trust does not give medical advice. Instead, we aim to help those diagnosed with syringomyelia, Chiari malformation, or related conditions, to understand what their hospital specialist is saying to them. Any decisions that you may make, about surgical intervention, medical treatment or otherwise, must be based on your discussions with qualified health professionals. The Ann Conroy Trust Charity does provide a list of UK-based hospital specialists, who have declared an interest in treating the conditions with which the Charity is concerned.
We like to keep you up to date on news & developments as soon as we can. Here’s a few of our latest posts.
To increase knowledge and understanding of SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. See also hydromyelia. More & Chiari MalformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described – see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms. and associated conditions,
and to provide support for patients, relatives, and carers.
The Ann Conroy Trust (ACT) was established in 1980 by Ann Conroy. As a SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. See also hydromyelia. More patient herself, Ann realised others living with the conditions and their carers needed support. Raising funds to enable research into the condition of SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. See also hydromyelia. More and its associated disorders was very important to Ann. Our charity is run & supported entirely by our wonderful volunteers. We are the only organisation in the UK providing educational material about SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. See also hydromyelia. More and Chiari MalformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described – see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms..
We share updates, awareness posts and useful information on Instagram. Here is a selection of our most recent posts.
Chiari Malformation is often associated with headaches, but the condition can affect people in many different ways.
Symptoms can include dizziness, balance issues, fatigue, brain fog, tinnitus, numbness, tingling, visual changes, memory difficulties and sleep problems.
Not everyone will experience the same symptoms, and symptoms can vary in severity from person to person.
Many of these challenges are invisible to others, making it difficult for people living with Chiari Malformation to feel understood.
By raising awareness, we can help more people recognise the signs, seek support and feel less alone in their journey.
#ChiariMalformation #RareDiseaseAwareness #InvisibleIllness #BrainFog #ChronicIllness
If you`ve ever lived with a chronic condition, chances are you`ve heard: 💬 "But you look fine."
What people don`t see are the cancelled plans, the fatigue that doesn`t go away with sleep, the pain that becomes part of everyday life, or the effort it takes just to get through a normal day.
Chronic pain and fatigue aren`t always visible, but they are very real.
✨ Invisible doesn`t mean imaginary.
Today, we`re recognising everyone living with chronic pain and fatigue, and helping to raise awareness of the challenges that often go unseen.
#ChronicPainAwareness #FatigueAwareness #InvisibleIllness #YouDontLookSick #ChronicIllness
Carers need care too.
Supporting a loved one can be one of the most rewarding things we do, but it can also be physically, emotionally and mentally demanding. Carers often spend so much time looking after others that their own wellbeing takes a back seat.
This Carers Week, we`re sharing some simple reminders about the importance of self-care, taking breaks, asking for help and accessing support when you need it.
Remember: looking after yourself isn`t selfish - it`s essential.
Swipe through for guidance and support for carers, and visit our website to explore helpful resources.
#CarersWeek #CarerSupport #AnnConroyTrust #ChiariMalformation #Syringomyelia
This Carers Week we want to recognise the partners, parents, relatives and friends who provide support every day.
Caring can involve:
💜 Attending appointments
💜 Helping with everyday tasks
💜 Providing emotional support
💜 Simply being there
To everyone in a caring role - thank you.
#CarersWeek #CarerSupport #UnpaidCarers #ChiariMalformation #Syringomyelia
Today on World Brain Tumour Day we’re recognising everyone affected by brain tumours and raising awareness of neurological health.
Symptoms such as persistent headaches, dizziness, balance difficulties, vision changes and numbness can occur across a range of neurological conditions, including Chiari Malformation and other conditions that affect the brain and nervous system.
Symptoms can have many different causes, which is why understanding changes in your health and seeking medical advice when something doesn`t feel right is important.
Awareness helps people feel heard, encourages conversations, and supports earlier understanding of neurological conditions.
Today we stand with everyone affected by neurological diagnoses and the journeys that come with them 💜
#WorldBrainTumourDay #BrainTumourAwareness #NeurologicalHealth #ChiariMalformation #Syringomyelia #AnnConroyTrust
When Georgia was diagnosed with Chiari Malformation and Syringomyelia at 17, her family faced a long and difficult journey to find answers. After years of unexplained symptoms and being told anxiety could be the cause, they finally received the diagnosis they had been searching for.
The Ann Conroy Trust provided reassurance, understanding and support during an incredibly challenging time.
Today, Georgia is thriving in her career as a journalist, and her story is a powerful reminder of why awareness, early diagnosis and patient support matter.
Read Sally`s full story on our website.
#ChiariMalformation #Syringomyelia #PatientStory #RareDiseaseAwareness #AnnConroyTrust
💜 You don`t have to face it alone.
Receiving a diagnosis, navigating symptoms, supporting a loved one, or simply having questions can sometimes feel overwhelming. Our helpline is here to provide a listening ear, practical information and signposting to further support.
Whether you`re living with Chiari Malformation, Syringomyelia or Hydrocephalus, or caring for someone who is, we`re here to help.
📞 Ann Conroy Trust Helpline: 03330 149 450
For opening hours and further support, visit our website.
#AnnConroyTrust #ChiariMalformation #Syringomyelia #Hydrocephalus
Sometimes, when someone is living with a chronic condition, the question "How are you?" can feel difficult to answer.
A simple change in how we start a conversation can create space for more honest, meaningful connections.
Whether it`s asking about their energy levels, offering support, or simply checking in, small questions can make a big difference.
Remember, not everyone wants to talk about their symptoms every day. Sometimes asking about the things bringing them joy can be just as important.
What question do you appreciate being asked when you`re having a difficult day? 💬
#ChronicIllness #InvisibleIllness #ChronicCondition #PatientSupport #RareDiseaseCommunity
Living with Chiari Malformation, Syringomyelia, or a related condition can feel overwhelming at times. Having someone to talk to who truly understands what you are going through can make a real difference.
Our confidential telephone helpline is run by trained volunteers who have lots of insight and experience with these conditions. Whether you are newly diagnosed, supporting someone you care about, or facing a difficult decision about treatment, we are here to listen and offer support.
Call us on 03330 149 450 during our opening hours to speak with someone who understands 📞
