Jane L Edwards 📚

Author Chronic illness: learning to live behind my smile. #Vasculitis Love #books and #dogs. #raredisease #chronicillness #cev #immunosuppressed. Views my own

[Jane L Edwards 📚 @Jane_L_Edwards]

New #blog post.
“After the diagnosis, I thought I could battle through, I thought I would win, I thought I was invincible. Unfortunately, I couldn’t win, and I was so far from invincible... I did not understand the words chronic illness.”

https://t.co/zZgyE4RHuk

[Jane L Edwards 📚 @Jane_L_Edwards]

https://t.co/marpiliMvT

[Jane L Edwards 📚 @Jane_L_Edwards]

Have a read of my interview with US based Health Central
https://t.co/ySPuFinfFu

[Jane L Edwards 📚 @Jane_L_Edwards]

Have a read of my interview with US based Health Central
https://t.co/ySPuFinfFu

[Vasculitis - In memory of John Mills MBE 💙💚 @vascuk]

#CarersWeek #Vasculitis a #raredisease does not just affect the patient. It has consequences for #carers & families. Carers also face difficulties and problems. These vary depending on the stage at which the #patient is at any particular time. https://t.co/nXy03esYaq

[Vasculitis - In memory of John Mills MBE 💙💚 @vascuk]

#VolunteersWeek! Just want to say thank you to everyone who supports #VasculitisUK Everyone makes such a difference, all #volunteer in their own time - Trustees, #Volunteers, doctors, #vasculitis online support team, #helpline, #fundraisers, #newsletter https://t.co/tobxnPr1Bm

[ZoiAn @ZoiAn2]

Vasculitis Awareness Month - last post!
We end our month with heartfelt personal wishes from individuals living with #vasculitis. Key desires include returning to #remission, being present for loved ones, celebrating milestones, and enjoying life's simple pleasures.
The emotional weight of these wishes highlights the daily challenges faced by those with the condition. These aspirations reflect a deep yearning for normalcy and fulfilment in life despite the challenges of vasculitis.

Thank you for joining us on this month long journey – we hope to have helped you to Visualise Vasculitis.
Vasculitis UK are running a month-long campaign to help you to Visualise Vasculitis, find further information on our website https://t.co/D8ZEG9TZME or if you would like to donate, please go to https://t.co/LOyjWHwgnr
#visualisingvasculitis #raredisease #livingwithvasculitis @RAIRDA @_ERNRITA @VasculitisIA @vascuk @ukivas @eurordis

[ZoiAn @ZoiAn2]

Vasculitis Awareness Month
This slide encourages individuals to live life to the fullest while managing vasculitis. Trusting one’s instincts and cherishing positive moments are key takeaways. It emphasises the importance of building a good relationship with oneself and seeking reliable information from trusted sources like Vasculitis UK, rather than unreliable ones.
#vasculitis #visualisingvasculitis #livingwithvasculitis #raredisease

[ZoiAn @ZoiAn2]

Vasculitis Awareness Month
Here is some practical advice for managing vasculitis, emphasising the importance of listening to one’s body and maintaining open communication with healthcare providers.
It likens managing the condition to a marathon, suggesting that pacing oneself is crucial.
Taking breaks and being kind to oneself are vital components of this journey. Encouraging to embrace good days while not stressing over rest days promotes a balanced approach to living with the condition.
#vasculitis #visuaisingvasculitis #raredisease #bekindtoyourself @vascuk @VasculitisIA @_ERNRITA

[Vasculitis - In memory of John Mills MBE 💙💚 @vascuk]

#VasculitisAwarenessMonth #Vasculitis - Not just tired but an overwhelming and debilitating feeling of #fatigue!

[Vasculitis - In memory of John Mills MBE 💙💚 @vascuk]

It is essential for a comprehensive approach to care, including mental health support, interdisciplinary & multidisciplinary collaboration among all healthcare professionals.
More support and understanding for the economic challenges that many face. #vasculitis #ChronicIllness

[ZoiAn @ZoiAn2]

Vasculitis Awareness Month
Here, we delve into personal accounts from those diagnosed with vasculitis, emphasising their desire for comprehensive information and support.
#vasculitis #raredisease #visualisingvasculitis @VasculitisIA @_ERNRITA @ukivas

[Vasculitis - In memory of John Mills MBE 💙💚 @vascuk]

#Vasculitis #VasculitisAwareness Visualising Vasculitis - Multi-System involvement #lungs #kidneys #sinus #ears #nose #skin #eyes #throat #heart - painful muscles, joints, foot drop, neuropathy, - joining the dots to make an appropriate diagnosis is essential.

[Stamford All Saints' Peregrines @SaintsPeregrine]

The 3rd chick hatched at around 2.30 am this morning, but the first confirmation by visual was at 7.30 am when the falcon left to retrieve 'breakfast' - the tiercel then tried to sneak a peek at them but was quickly evacuated by the falcon returning.

[ZoiAn @ZoiAn2]

Vasculitis Awareness Month!
One common initial symptom of vasculitis is joint pain, many times so severe it makes moving impossible.
#vasculitis #vasculitisawareness #visualisevasculitis @_ERNRITA @RAIRDA_org @VasculitisIA @vascuk @Jane_L_Edwards

[ZoiAn @ZoiAn2]

Vasculitis Awareness Month!
One common initial symptom of vasculitis is joint pain, many times so severe it makes moving impossible.
#vasculitis #vasculitisawareness #visualisevasculitis
@_ERNRITA @RAIRDA_org @ukivas @vascuk @VasculitisIA

[Vasculitis - In memory of John Mills MBE 💙💚 @vascuk]

During May 2025, #VasculitisUK will share what it is like to live with #Vasculitis
We also ask those affected by vasculitis or their family members to hold an event on the 15th or 31st May (or any day that works for you) to celebrate the month of awareness https://t.co/uVTdHZubvh

[Vasculitis - In memory of John Mills MBE 💙💚 @vascuk]

May is #VasculitisAwarenessMonth. We want to help you to visualise what it is like to live with #vasculitis. #Ears #Nose #Throat #Sinus

[ZoiAn @ZoiAn2]

Vasculitis Awareness Month!
Vasculitis is a rare rheumatic autoimmune illness and it can present in different ways.
#vasculitis #vasculitisawareness #raredisease #livingwithvasculitis #visualisevasculitis
@_ERNRITA @RAIRDA_org @ukivas @VasculitisIA @vascuk

[RAIRDA @RAIRDA_org]

Today, RAIRDA has released the Rare Care Matters report, which reveals that some individuals with rare autoimmune rheumatic diseases (RAIRDs) in the UK encounter major barriers in accessing care and treatment.
Read the full report on our website
👉https://t.co/pBwe0oifbX

[ZoiAn @ZoiAn2]

A very interesting read that provides food for thought, how can we improve the care of patients with rare rheumatic diseases in the UK
#Vasculitis #RareDisease @RAIRDA_org @_ERNRITA @ukivas @VasculitisIA @vascuk @Jane_L_Edwards