Save Our Nevra L.

HELP US SAVE NEVRA LIZ

Nevra Liz is a 27 year old woman in Karachi, Pakistan who has been suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Ehlers-Danlos Syndrome (EDS), and related comorbidities such as dysautonomia since childhood. However, her health has taken a dramatic downturn in recent years with the onset of severe Premenstrual Dysphoric Disorder (PMDD). Before becoming dangerously ill she studied many languages, and later used her translation skills to help out disabled patients all over the world, and advocated for disability rights. She is no longer able to do any of these things. Unfortunately watching an episode of a comedy show is all she can manage on a good day since her disabilities have become so profound. Nevra's average day is about enduring extreme pain and trying to manage her care such as personal hygiene, medicines and food intake, corresponding with her patient advocate and other medical specialists. All of which is far too much to manage with her challenging symptoms such as restless sleep, nausea, lax joints, pressure headaches, fluctuating blood pressure and body temperature. Often during her PMDD attacks she has speech problems and cannot communicate with her mother which impacts her daily care further.

Please continue reading to learn more about Nevra, who she is and what we can do to help her win this battle.

This GoFundMe is to help Nevra cover her urgent surgical interventions and medical care as well as her ongoing basic needs, so she can live with a reasonable amount of dignity and access the treatments and care that she so urgently requires.

Nevra doesn’t have the funds to get the basic things she needs for daily life, let alone proper medical care. She has no savings or way of making income, as she has been and continues to be too sick to work. There is no social security or charitable support for disabled people in Pakistan, where there is a lot of stigma attached to disability and chronic illnesses.

There are now several urgently needed medical interventions that, until now, Nevra has had to forgo because of cost: Lupron (chemical menopause) is a short-term treatment for PMDD that may make her life tolerable until she can get proper surgery, that we hope to be a permanent solution for at least her PMDD-related symptoms and impairments.

We hope that with proper treatment, Nevra may eventually get back to having a decent quality of life. However, it needs to be acknowledged that nothing is guaranteed when it comes to complex chronic illness and that Nevra may well continue to depend on our support.

No one deserves to suffer so greatly, but Nevra has earned and deserves our help. We hope that you will consider supporting Nevra!

** Your kind help and support of this fundraiser since April 2020 — with $ 18,000 raised — has enabled Nevra to cover all medical expenses, including hospitalization as well as living expenses in that period. Nevra thanks you from the bottom of her heart.

We want to clarify that current fundraising is for future expenses and is in addition to the amount already raised.**

Nevra’s needs include:

Urgent Medical Needs

Lupron (chemical menopause- can be met locally): Nevra’s PMDD has gotten worse over the years to the point that she is now completely unable to carry out basic daily self-care activities for two or more weeks every month. She screams in pain and her doctors will not give her anything besides non-steroidal anti-inflammatory drugs (NSAIDs), but they do not work. Her patient advocate/consultant has been helping guide her treatment but her providers in Pakistan are resistant to providing the evidence-based treatments for her conditions, partly because of the religious stigma associated. Nevra also needs access to medications that are not available in Pakistan. PMDD is caused by fluctuations in hormones and sensitivity to them, in Nevra’s case probable sensitivity to progesterone. Lupron (in conjunction with hormone replacement therapy to ward off side effects) is used to completely shut off ovulatory function and progesterone production. This could provide temporary relief until Nevra can have a total bilateral salpingo-oophorectomy hysterectomy, also known as full hysterectomy (see below).

Laparoscopy(local) and Full Hysterectomy (abroad) : A hysterectomy is a common, proven treatment for PMDD in other countries. Likewise, laparoscopy is the only effective way of diagnosing and treating endometriosis, which Nevra is suspected of having. Nevra was just approved to get laparoscopy in Pakistan, but it is expensive. However, no doctor will provide hysterectomy in Pakistan, as Nevra is an unmarried woman. Ingrained institutionalized prejudices concerning the role of women in society are a serious roadblock to her treatment. Nevra is, therefore, seeking this surgery abroad. She and her friends are exploring possibilities at hospitals and surgical practices in Dubai. The cost of transport, accommodation, and the treatment itself will need to be funded.

Further Procedures: Nevra also needs an endoscopy, colonoscopy, and other diagnostic procedures to rule out other illnesses.

Ongoing Regular Needs:

Food: Nevra was hospitalized for internal nutrition in April 2020. Nevra’s food sensitivities mean that finding calorically dense food that won’t trigger an allergic reaction is a constant struggle. Nevra’s disabilities are so profound that she cannot prepare her own meals and has to pay for food preparation.

Housing: Nevra finally has access to mold-free housing, hot water for winters, reliable electricity and an air conditioner (to combat the constant heat waves of Karachi) the cost of the AC needs to be covered. Nevra has recently got a new mattress which has given her much relief and joy. She still lacks a bed frame and other basic furniture items. She currently has no storage and still lives out of suitcases and bags.

Patient advocate/consultant - Due to cognitive impairment Nevra has had the help of a dedicated remote consultant and board certified patient advocate who is a researcher on the Ehlers-Danlos consortium, a body that creates guidelines for EDS treatments and its comorbidities worldwide. This help has been essential in getting Nevra needed medications and keeping her alive. She has been working mostly pro bono but she does require some compensation.

Medical and Other Care: Nevra needs to pay for the ongoing medical care she receives from her GP and local medical specialists as well as for medications. She depends on a paid carer for personal care and help with tasks such as showering. She needs assistance with all daily living activities. She currently needs Vitamin D3 shots, IV iron infusions, B12, IV saline and has to pay a nurse to access those.

Mental health Care : Although the psychological issues Nevra experiences are mostly due to PMDD which has a biological basis, Nevra has developed coping strategies with the help of a therapist to help minimize these. Nevra would benefit greatly from this support continuing into the future.

Transportation: Nevra needs transportation to and from all appointments and testing. Due to her condition, she isn’t able to drive and depends on Uber to get her to and from appointments.

Non-Financial: Call for Volunteers!

Nevra occasionally needs help with paperwork and various things. She would like help getting her story out there and having people update her social media with her condition so her friends and GoFundMe supporters have an accurate up-to-date idea of what is going on. We attempt to provide receipts of spending but it's cumbersome to track and report – we will need to find more assistance with this. Our priority has been keeping Nevra stable so we aren’t always able to accomplish all of our goals, any help towards that is very much appreciated and it can be a way to give without financial constraints.

About Nevra

Nevra is so much more than her medical problems. Despite leaving school at the age of 11 because of her severe ME/CFS, she has managed to learn multiple languages (English, Turkish, Azeri, Farsi, Urdu, Hindi, Bosnian/Croatian/Serbian, Irish Gaelic, and Greek). Over the last two years these skills have begun to fade because of her deteriorating cognitive function and reduced social contact. However, Nevra hopes she can renew her passion for languages and communication as her health improves.

2018 Unrest Screening and Q&A in Karachi, organized by Nevra for #MEAction Network

She was also an avid reader, dancer, writer, activist, and yoga-enthusiast. Before she became severely ill, Nevra began building a community of people living with ME/CFS, and founded The #MEAction Network support group for Pakistan in 2017. She used the community she had organized and her language skills to raise awareness for the award-winning documentary Unrest. Nevra translated the film into several more languages to help spread awareness of her condition and help to organize screenings all over the world.

Nevra was a dedicated advocate for the larger chronic illness community as well, fighting to bring people together, to educate and push for better care. You can read about some of Nevra’s work here, when she was trying to launch the “Neglected Chronic Illnesses Foundation” in Pakistan, aiming to focus on ME/CFS, MS, Lupus, Endometriosis, Orthostatic Intolerance, and Polycystic Ovary Syndrome. Nevra has been a fighter for people with chronic illnesses, but now she needs help.

Nevra inspires us. She advocates for herself in a world that constantly discriminates against disabled people like her, especially those with misunderstood illnesses. It takes courage and vulnerability to reach out for support when she needs it. Throughout all her symptoms, which are torturous, she still tries to support her sick friends as much as she can.

She has fought a nonstop battle and we hope that you can support her so she isn’t doing this alone.

You can read more about Nevra, her conditions, and the treatment and care she needs to fund, below. For social media / t-shirts / and additional information please go to https://linktr.ee/SaveLizNevra