Support is just a click away, you’re never alone

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Adrienne Currie

Co-founder and Trustee, The Lauren Currie Twilight Foundation

For people living with rare autoimmune diseases such as ANCA-associated vasculitis, patient associations are providing invaluable support

For many people with vasculitis, or other chronic conditions, things don’t suddenly get better with diagnosis, long term support is vital to manage the condition.

So finally, after what felt like a lifetime of chronic pain, anxiety, hospital appointments, tests, more tests, bewilderment, fear, exhaustion and worsening symptoms, you’ve been diagnosed with a type of vasculitis, such as ANCA associated vasculitis.

Powerful immunosuppressants, a treatment plan and regular monitoring mean that this potentially life-threatening disease has been brought under control and you’re now on the path to remission. So why do you still feel so fearful?

The road beyond remission can be fraught with a combination of invisible symptoms such as sleepless nights, depression, anxiety and an inability to work leading to financial worries, exhaustion, mood disorders and a strain on relationships.

For conditions like this, where stress can cause flare ups, intervention and support are essential.

Surveys, clinical studies and patient stories have all highlighted the need for charities to provide practical and holistic support for vasculitis patients. That support is readily available.

Providing practical and holistic support

Surveys, clinical studies and patient stories have all highlighted the need for charities to provide practical and holistic support for vasculitis patients. That support is readily available.

Vasculitis charity websites point to patient led support groups and helplines. This vital contact reduces feelings of isolation and can improve coping skills and self-care.

Emotional wellbeing is equally important and the provision of mindfulness therapies, exercise, sleep and pain management, 24/7 counselling, diet and nutrition support are all available online and through residential wellbeing courses at LCTF. Such crucial support empowers patients to regain control of their lives. 

UK-NP-2100231