In Pakistan, severely chronically ill disability advocate and survivor of domestic violence Nevra Liz Ahmed urgently needs surgery for a debilitating health condition. This is because it’s worsening her severe myalgic encephalomyelitis (ME/CFS) by the day. Specifically, among a huge list of the devastating chronic illnesses Nevra lives with, she has undiagnosed probable endometriosis – which is causing her relentless and excruciating pain.
Now, Nevra has a chance to get the first stage of surgery for this – and soon. Crucially, this could set her on the road to recovery for her endometriosis, and potentially even make it possible for her to travel abroad for further surgeries. However, there’s a significant catch. This is that the surgery, hospital stay, and cost of a medical advocate to be there with her will add up to around £10,000. So Nevra and her friends are appealing for financial support.
There are multiple ways for people to pitch in – read on to find out how you can help.
It’s vital Nevra gets this surgery, as the pain is becoming unbearable. And without it, her severe ME, and other debilitating conditions will only continue to get worse.
Severe ME/CFS and endometriosis – a disastrous combination
Nevra is a 29-year-old severe ME/CFS patient in Karachi, Pakistan. She is mostly bed-bound, non-verbal, and fully dependent on others for her care. The Canary previously wrote about Nevra’s complicated situation – which you can read about here.
And right now, Nevra’s likely undiagnosed endometriosis is making her severe ME/CFS, as well as a multitude of other conditions, inordinately worse.
Most significantly, the persistent pain has exarcerbated her post-exertional malaise (PEM). This is the hallmark feature of ME. It entails a a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities. Nevra told the Canary that:
I’m on pain meds every two hours and only getting one to four hours of sleep, as the pain meds wear off and I’m awoken by pelvic cramps, vaginal spasms, and vomiting.
It’s why she has urgently sought out medical treatment for this from a hospital in Karachi.
However, to get the treatment, she will have to fork out around £10,000. Notably, this is for the diagnostic laparoscopy, a hysteroscopy, as well as to cover the costs of her hospital stay. Nevra has been trying to get this since 2017, but has had to postpone. This has been due to lack of funds for it, as well as living in an unstable, and unsafe abusive environment. In fact, Nevra came close to getting the laparoscopy in March. However, she had to use her raised funds to escape domestic abuse, and the mold-infested household her family moved her into which was further harming her health.
Surgeries could be a step in the right direction
But she can’t wait any longer for these surgeries. Her health is rapidly deteriorating, and she’s now experiencing near constant agony she has described as “level nine pain”, alongside persistent bleeding outside her menstrual cycle.
A doctor has provisionally agreed to carry out the laparoscopy this December, or in January. However, if she’s unable to pay for it, they will drop Nevra as a patient altogether.
The other problem is, as the Canary previously highlighted, it’s not possible for Nevra to get all the surgeries she needs in Pakistan. For instance, this includes a hysterectomy for her Premenstrual Dysphoric Disorder (PMDD). Therefore, to get these, she will have to travel abroad.
As things stand now though, Nevra is too sick to make the journey. But, she hopes that the diagnostic laparoscopy could be the first step towards being well enough to do so.
As well as this, in the event the surgeon identifies anything to be life-threatening, the doctor will have to act. Nevra also therefore feels the laparoscopy is crucial to rule out anything that’s putting her life at risk.
How to help Nevra afford her surgery
With the clock ticking on obtaining the necessary funds, Nevra needs people to step up if they can. Here are a number of ways people can help her to afford this vitally necessary diagnostic surgery:
If financially in the position to do so, donate directly. The best way to do this is via PayPal to Nevra’s fundraising appeal. Nevra does also have an ongoing fundraiser, however the fundraising platform takes substantial chunks out of donations. For that reason, she’s asking that wherever people are comfortable, they send financial support to the above PayPal method instead. However, all support is welcome.
For those that aren’t in a position to donate at such short notice, she’s also requesting interest-free loans. Since the surgery is imminent, she needs the finances upfront, and fast. So this is one way people can support her if they have the finances now to lend funds, but can’t commit to a donation. The basic principle would be to indicate how much, and how long the loan could be for, with agreed upon dates for Nevra to pay these back to people in full (without interest). If you can do this, please contact me at [email protected]
So far, multiple people have committed significant loans between £500 – £1,500 for Nevra’s surgery. She has agreed to pay these back at periods between one and three years, according to agreements with each person who has come forward.
A few of Nevra’s international friends and advocates – who also live with ME/CFS – have created a winter holiday fundraising raffle, with handmade prizes. They’re aiming to raise at least £1,000, but the more the better. This is specifically for UK and EU-based entrants. However, all are welcome to donate and nominate a UK or EU-based friend to receive the prizes. Chronically ill and disabled creators have made these in solidarity with Nevra.
Aside from these, Nevra also needs people to spread the word on this urgent fundraising request. Thanks to people’s generosity, she has already raised £5,700 in loans and donations. Nevra therefore needs to raise the remaining £4,300, so any help
Unconscionable cost of care putting a price-tag on Nevra’s life
Of course, severely chronically ill and disabled people shouldn’t have to fundraise for the vital medical treatment they need. However, the reality is, for many people living with severe ME, the medical support just isn’t there. Likewise, with endometriosis, healthcare systems across the world leave women fighting for treatment that should be a given.
Nevra’s experience of trying to get the necessary medical care for severe ME/CFS and her endometriosis has been characteristic of the medical misogyny that still pervades diagnosis and treatment for both conditions.
All the while, the debilitating pain and near constant bleeding for the last four months is putting her health at immense risk.
However, treatment – at least for her endometriosis – is possible. The issue is that there’s a £10,000 financial barrier in the way of her accessing it. It’s abhorrent that the value of a young woman’s life comes down to the price-tag for this treatment. But this is where we’re at. So, mutual aid from allies could now make all the difference – please support Nevra if you can.
Feature images supplied
