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As if living with ankylosing spondylitis isn’t enough…

3/4/2018

3 Comments

 
On a typical morning, Poppy Mae Lang is unable to move for an hour after she wakes up, due to stiffness in her joints. When that has subsided, she drags herself to the shower, her limbs feeling like they have 20 kg weights attached to them. She struggles to dress herself and make breakfast, before putting on her shoes and braving the day.

When asked where it hurts most, Poppy’s unwavering response is, “Everywhere.”

​This might sound like the plight of someone in their eighties or more, but Poppy is just 22 years old.
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The reason for Poppy’s morning struggle? Ankylosing spondylitis (AS), a form of inflammatory arthritis which most commonly affects the spine. It can also affect other joints, eyes, bowels, skin, lungs and heart. At best, AS can be managed with anti-inflammatory drugs and exercise, but at its worst, a combination of strong medications is necessary.

Poppy was diagnosed with the condition three years ago, after showing symptoms from the age of 13.
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Poppy gets on with life as best she can, studying at Manchester Metropolitan University and working part-time to support herself through uni. She is supported by her partner Ben, who Poppy describes as “amazing”. Her university is understanding, but teachers and peers will never know just how painful life can be with AS – even something as simple as sitting in the wrong type of chair can cause incredible pain and discomfort. Despite this, Poppy maintains a positive, proactive attitude.

She has, however, seen some dark times due to AS. Over the years she has been prescribed a huge number of different drugs to help her with her daily pain and fatigue. Poppy also is also hypermobile, meaning her joints painfully move beyond the normal range, and lives with fibromyalgia, a long-term condition that causes pain all over her body. As such, it took a long time for her consultant to be able to find the right combination of drugs. At one point, Poppy was on seven different drugs to combat her condition.

The monthly cost of these prescriptions was £61.60 – an unaffordable sum for a student working part time. This meant that she often skipped her medication for two to three weeks at a time, forcing her to miss lectures due to pain and her inability to move.

Without medication, so many people with ankylosing spondylitis like Poppy don’t have the quality of life that people who don’t live with a long-term condition do. Please support those who need it by signing the petition, which calls for the medical exemption list to be revised and include free prescriptions for all those living with a long-term condition.

For more information on ankylosing spondylitis (axial spondyloarthritis) visit www.nass.co.uk. ​
3 Comments
Dave Lang
3/4/2018 15:43:04

Unfair to have some coverage for prescription exemption and not others , needs including or tax reduction to sufferers

Reply
Jenna
27/11/2020 07:30:37

Why can’t she get a PPC? I have AS and pay £10 a month for all of my prescriptions. It is pretty inexpensive, yes it’s a crappy thing to have and I struggle myself daily but if we start giving prescriptions to everyone who ‘didn’t choose to have an illness’ where does it end? Considering you paid privately for her diagnosis I’d say £10 a month isn’t anywhere near as expensive. There are people out there who are so much worse off with this illness who are actually disabled who genuinely struggle to pay for their food and to keep a roof over their head so she needs to stop expecting for handouts.

Reply
Heather
3/4/2018 18:37:56

I entirely agree with prescription exemption for long term illness but by buying a yearly exemption certificate meds only cost about £2 or so a week

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