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. Read 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. Read 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. Read 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. Read 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.
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 📞
Janet was diagnosed with Syringomyelia after years of pain and headaches with no clear cause.
Her symptoms affected her arms, hands, neck, and upper back. She also experienced numbness, fatigue, and changes to her vision. For a long time, answers were hard to find, but an MRI scan eventually showed fluid-filled cavities within her spinal cord.
Living with syringomyelia often means finding ways to adapt. Janet manages the ups and downs by pacing her activities, planning regular rest, and using mobility support when it helps. This approach allows her to protect her energy while continuing to enjoy the things that matter most to her.
By sharing her story, Janet hopes to raise awareness of Syringomyelia and help others feel less alone.
Click the link in our bio to read Janet’s story on our website.
#Syringomyelia #RareNeurologicalConditions #ChronicIllness #LivingWithDisability #HealthAwareness
We’re really pleased to share that the West Yorkshire Local Support Group will be meeting again tomorrow!
🗓️ Thursday 28 May 2026
🕡 6.30 pm – 8 pm
📍 Statement Suite, Aspire, 2 Infirmary Street, Leeds LS1 2JP
This relaxed, in-person meeting led by Julia Brannigan is a chance to connect with others who understand what it’s like to live with Chiari Malformation, Syringomyelia, and related conditions.
Whether you came along to our first session or this would be your first time, you’ll be very welcome. There will be tea, coffee, mineral water, and biscuits available for you to enjoy, so come along, grab a cuppa and be part of the conversation. 🍪☕️
If you’d like to attend, please let us know by emailing your contact details to: info@annconroytrust.org
#ChiariMalformation #Syringomyelia #SupportGroup #Leeds #ChronicIllnessCommunity #WestYorkshire
Let’s bust a few myths this EDS Awareness Month 👀
It’s easy to think Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) are just about being a bit bendy or having stretchy skin… but there’s a lot more going on beneath the surface.
These are complex conditions that affect connective tissue across the whole body, with symptoms that can be wide-ranging, unpredictable, and often invisible.
Swipe through as we separate myth from fact 💜
For more information visit: @ehlers.danlos
#EDSawarenessMonth #EhlersDanlosSyndrome #Hypermobility #InvisibleIllness #RareDisease #TogetherWeDazzle
For many people, the journey to understanding their symptoms doesn’t happen quickly.
Ehlers-Danlos syndromes (EDS) are a group of 13 connective tissue disorders, caused by genetic changes that affect how the body’s tissues function. While each type has its own diagnostic criteria, common features can include joint hypermobility, stretchy skin, and tissue fragility.
According to The @ehlers.danlos Society, it can take an average of 10 years to receive a diagnosis in the UK, leaving people searching for answers for a long time! This is because symptoms often overlap with other conditions, which can make EDS difficult to recognise.
hEDS is the most common type, but many forms of EDS are considered to be rare.
This EDS Awareness Month, we’re helping to shine a light on these conditions and the experiences of those living with them 💜🦓
#EDSAwarenessMonth #EhlersDanlos #EDS #Hypermobility #hEDS #ZebraStrong #TogetherWeDazzle
Chiari Malformation Type I is more frequently being recognised in people with connective tissue disorders like Ehlers-Danlos syndromes.
In EDS, the body’s connective tissues can be more fragile. This can affect the structures that support the head and spine, which may contribute to the development of Chiari Malformation and related symptoms.
For some people, this link can also influence how symptoms present and how the condition is managed. Treatment is often tailored to the individual, and not everyone will require surgery.
Understanding how these conditions can be connected is an important step in recognising symptoms, seeking the right support and feeling more informed about your care 💜🩺
If you’d like to know more about Chari and other related conditions, visit our website today! Link in bio.
#TogetherWeDazzle #EhlersDanlos #Hypermobility #ChiariMalformation #ChiariWarrior #EDSAwareness #HSD #CM1
Symptoms of Syringomyelia can vary from person to person and change over time 😵💫
Some are physical, while others impact concentration, energy levels and day-to-day functioning.
What’s often hardest is that many of these effects aren’t obvious to others.
Someone may look well on the outside, while managing complex and unpredictable symptoms behind the scenes. That’s why it’s so important to take the time to listen, learn and believe people when they share how they’re feeling.
If you’d like to better understand Syringomyelia please click the link in our bio to visit the Ann Conroy Trust website. We have a range of resources for individuals, families and carers navigating life with this condition.
#Syringomyelia #Syrinx #ChiariMalformation #NeurologicalHealth #HindbrainHernia
We all know that we should take care of our wellbeing… but how often do we actually make time for it? 🤔
Living with Chiari Malformation, Syringomyelia or a related condition can bring ongoing challenges that affect not only physical health, but mental wellbeing as well.
When you’re dealing with so much already, adding “self-care” to the list can sometimes feel like too much. This #MentalHealthAwarenessWeek is about taking action in small, realistic ways.
You don’t need to do something big or elaborate to make a difference!
Sometimes self-care is simply giving yourself permission to pause.
To listen to your body.
To take a breath before pushing on again.
Whilst raising awareness is incredibly important, the most meaningful change comes when we take care of ourselves and each other 💜
#MentalHealthFoundation #TakeAction #ChiariMalformation #Syringomyelia #Wellbeing
Living with conditions like Chiari Malformation or Syringomyelia often means managing symptoms that aren’t always visible.
Chronic pain and fatigue can have a profound impact on daily life, yet from the outside, someone may “look fine.” Although phrases like this are often well-intentioned, they often leave people feeling misunderstood or dismissed.
Many people associate fatigue with the feeling of tiredness but there is a big difference between the two. In reality, fatigue is a state of mental exhaustion that affects concentration, memory and overall functioning.
Chronic pain can be unpredictable and physically draining. It affects not just the body, but someones emotional wellbeing as well.
When you check in, try to keep the focus on listening rather than fixing. Giving someone space to explain things in their own way can help them feel understood, especially when their experience is unique.
#ChiariMalformation #Syringomyelia #ChronicPain #Fatigue #InvisibleIllness
