Maeve's story (Act on axial SpA)

Donate to our NASS Winter Appeal today to help support people like Maeve: nass-winter-campaign.raisely....
Meet Maeve. She waited seven years for a diagnosis of axial SpA. While she waited, full-time work became impossible and she ended up relying on Universal Credit to survive.
Did you know that the average 8.5 year delay to diagnosis cost the UK economy £18.7 billion per year? Did you also know that a patient aged 26 who waits 8.5 years for a diagnosis is likely to lose around £187,000?
This needs to change. We're campaigning for a Gold Standard time to diagnosis time of just one year. By driving down the average diagnosis time to one year, the UK economy could save £167,000 per person. And people like Maeve could live well with axial SpA sooner.
#WaitingCosts

Пікірлер: 3

  • @shawnray270
    @shawnray270 Жыл бұрын

    Thank you❤

  • @davyg8864
    @davyg8864 Жыл бұрын

    So glad i found this. I have been for a few blood tests, i had test done for rhumatoid arthiritis it came back false negative, my test for imflammation came back positive, my vitamin D came back low. I had xrays in my back/hip they came back as nothing showing, my neck and back came back saying i have arthitis. Its so confusing as my worst pain comes from my back and hip, although my full body aches, i wake up 2-3 times a night with my forearms, elbow and shoulders aching, my hands ache, wrist, ankles, hip and lower back, And my groin. Also have plantar fascitits in both feet. I have been referred to a rhumatalogist but going to be a long wait. Dont know if i can wait months i have been trying to get this sorted for years this is them just doing these tests. I am so down about my day to day life, my pain on a good day is a 7 out of 10 on a bad day 10. So tired and fed up. Take meloxicam and dhyrcodiene, vitamin d, and onzeprole. I have not been diagnosed but all my symptoms scream AS to me. Had pain for 8 years but the last 2 years have been horrendous, daily torture. Worst part is nobody understands how much pain i am in on a bad day

  • @NASSCentral

    @NASSCentral

    Жыл бұрын

    Hi Davy, I'm sorry to hear you're going through this and have been in pain for so long. I'm glad you've been referred to a rheumatologist, as they will be able to do all the correct tests to check for axial SpA. I've replied to your other comment with some links to information about the tests for diagnosis and also our Helpline details. While waiting for a referral, it can be helpful to ask for a referral to a pain management clinic or occupational therapy, as they can give practical tips and support on coping with pain. We also have advice on self care for pain on our website: nass.co.uk/managing-my-as/my-as-my-life/managing-pain/ I hope that's helpful and please don't hesitate to get in contact with our Helpline if you'd like to chat to someone. Take care ~Zoë