Miriam Martin

Interested in rare diseases & MH
Lives with syringomyelia, spina bifida occulta, scoliosis & associated cndts.
Chair of SACA (volunteer)
My views are my own.

[Miriam Martin @mirmrtn]

Syringomyelia Arnold Chiari Association (SACA) is a Northern Ireland registered charity.

We provide information and support to families living with Syringomyelia and Chiari Malformations.

Helpline 078 26 004 008
[email protected]

[Miriam Martin @mirmrtn]

@mgtruth 💔

[Miriam Martin @mirmrtn]

@BBCNewsNI 🙏

[Miriam Martin @mirmrtn]

12,000 letters!!
That's a nightmare for everyone concerned. It needs to be addressed urgently. Patients need to know more - what were the referral dates by GPs? Were any of these patients on long waiting lists, still waiting patiently? I suggest a separate helpline set up now!

[Marie-Louise Connolly @mlchealth]

Should you have been notified about a Northern Ireland hospital follow up investigation? A problem with Encompass means patients didn’t get letters. https://t.co/Mr3RNUBYg5

[Miriam Martin @mirmrtn]

@ASAPChiariSyrin 2/2 the most helpful info has come from Spina Bifida charity @SHINEUKCharity thankfully there's an adult spina bifida clinic in Belfast, run by a rebabilitation consultant, monitorining BP also bladder and kidney health. Grateful to all including @NIRDPNews where I found Shine

[Miriam Martin @mirmrtn]

@ASAPChiariSyrin My Syringomyelia was caused by another neural tube defect, Spina Bifida Occulta (SBO), a Closed Spinal Dysraphism. A lumbar shunt drained the syrinx, but symptoms increased in later years, there appears to be little or no research about the effects of living with both cndts 1/2

[American Syringomyelia & Chiari Alliance Project @ASAPChiariSyrin]

Surgeons usually treat the underlying cause of #syringomyelia first, reserving #shunting for when other treatments have not reduced the #syrinx

https://t.co/zLfCIM5prI

Learn more about treatment for SM at ASAP's free #virtualconference: https://t.co/di4DzNmBxp

#Neurosurgery #shunt #spinalshunt

[Mark Young @MarkYoung23]

Today is World IBD Day 💜

A significant day for people living with Inflammatory Bowel Disease (Crohn’s Disease and Ulcerative Colitis) to highlight the challenges they face everyday.

To everyone living with IBD: your strength is seen, your fight matters and you are not alone.

[George The Stourbridge Junction Station Cat @TheStourbridge]

Night night sweet dreamies ✨

Learn to say yes — to self-care, to mental health days, to quiet moments of rest, and to the hobbies and little interests that nourish your spirit and bring you back to yourself.

Not every moment has to be productive to be valuable.

[Miriam Martin @mirmrtn]

@AddressingLife 🙏🙏

[Aaron Savage @BDPodcastNI]

The fact that @LizKimminsSF, @sinnfeinireland & @deptinfra hasn’t introduced Free Travel for disabled people is #criminal! @DPACNIreland has introduced this letter with @actnowni. Please sign this open letter and share it out!

https://t.co/oJ2MVGUDYP

[Miriam Martin @mirmrtn]

2/2 Central Nervous System:
▪ Numbness
▪ Tingling
▪ Loss of pain and temperature sensation
▪ Chronic nerve pain

💙 Autonomic Nervous System
▪ Bowel or bladder problems
▪ Sexual dysfunction
▪ Changes in sweating
▪ Blood pressure or heart rate regulation issues
#ALTing

[Miriam Martin @mirmrtn]

#SyringomyeliaAwareness
It's May and time to raise awareness of Syringomyelia, it's interesting to read the symptoms, which I can personally relate to (apart from chronic pain) broken down like this. They don't appear all at once but can creep up at different stages.

[American Syringomyelia & Chiari Alliance Project @ASAPChiariSyrin]

💙The effects of syringomyelia can be widespread throughout the #nervoussystem.

Because #syringomyelia affects the spinal cord itself, it can disrupt both sensory and motor nerve pathways, as well as autonomic pathways if the syrinx grows large enough.

https://t.co/tAbUX44gLI

#syringomyeliaawareness #syrinx #spinaldisease #neuroscience #raredisease

[Miriam Martin @mirmrtn]

Apologies #ALTg missing hope this helps:
The effects of syringomyelia can be widespread throughout the nervous system.

🚶‍♀️‍➡️Somatic Nervous System:
▪ Muscle weakness
▪ Loss of reflexes
▪ Difficulty walking
▪ Muscle wasting
▪ Problems with coordination and balance 1/1

[Miriam Martin @mirmrtn]

A well written article about a woman called Chloe with a Functional Neurological Disorder (FND)
For anyone seeking a support group I'd highly recommend
https://t.co/SAW8VFMriJ
#FND
#NINCA
#FightForNeuro

[Belfast Telegraph @BelTel]

We cling to a hierarchy of illness, shaming those whose problems we don’t understand... that old prejudice needs to go, writes Fionola Meredith

https://t.co/ZuFndGR9P0

[Action for Happiness @actionhappiness]

Meaningful May - Day 3: Take a step towards an important goal, however small https://t.co/QObG6cjVZu #MeaningfulMay

[Joanne Sansome @joanne_sansome]

My Sister in Law is running the relay in tomorrows Belfast Marathon for the Charity of Sensory Kids NI, please give if you can and/or repost! Thank you, for your support it’s much appreciated! Good luck to all the runners tomorrow 💜 https://t.co/T1vFaW0gD7

[Miriam Martin @mirmrtn]

I have no idea why 2024 banner is appearing on my post, I took the link from 2026 programme, here's correct banner!
Those ladies are a class act BTW, 'Lotta and Stina, Just an Ordinary Day.'

[Miriam Martin @mirmrtn]

Looking for family fun in #Belfast this weekend? Check out the Festival of Fools, fantastic street entertainment #foolsfestival
Glad I went along for the laughs, great seeing old familiar faces and new acts. Looking forward to more Sunday, Monday too. https://t.co/zRLC3cdPbi

[Conquer Chiari @ConquerChiari]

Advanced Imaging Reveals Damage To Cerebellar Connections #ConquerChiari #ChiariResearch #CerebellarTonsils

[Conquer Chiari @ConquerChiari]

Eye-Related Symptoms

PDF Version: https://t.co/p5bLO6Cyhn

#chiariresearch #conquerchiari #chiarimalformation #chiariawareness #ccwaa26