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Help Nevra Secure Surgery, Care, and Safety

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Nevra is a 28 year old young 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 aged 6. However, her health has taken a dramatic downturn in recent years with the onset of severe Premenstrual Dysphoric Disorder (PMDD). In 2020, she had to be admitted to hospital to receive liquid nutrition via TPN because of extreme weight loss.

Nevra's average day is about enduring extreme pain and trying to manage personal hygiene, medicine and food intake, while coordinating medical appointments. All of this is a lot to cope with on top of severe symptoms (migraines, nausea, fluctuating blood pressure etc. make eating and sleeping challenging). Often during intense PMDD cycles, she has difficulty speaking and cannot communicate with her carers.

On top of this, she is dealing with a very unstable home situation due to physical neglect, mental and emotional abuse and religious coercion. Her family recently moved her against her will to a house where her bedroom is riddled with mould and facing relentless traffic noise and fumes, all of which have greatly exacerbated her ME symptoms. The ongoing threat of violence puts peace out of reach and makes recovery impossible.

Before she became so profoundly ill, Nevra was also an avid reader, writer, dancer and yoga enthusiast. Despite having to leave school at the age of 11 because of severe ME/CFS, Nevra is intellectually gifted and managed to teach herself multiple languages (English, Turkish, Azeri, Farsi, Urdu, Hindi, Bosnian/Croatian/Serbian, Irish Gaelic and Greek).

She used her language skills to translate the award-winning documentary Unrest into several languages to help spread awareness of ME/CFS. In 2017 she founded The #MEAction Network support group for Pakistan and she advocated for solidarity amongst the wider chronic illness community.

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 will be able to renew her passion for languages and communication as her health improves.

Nevra has no savings or income, as she has been too sick to work her entire adult life. There is no social security or charitable support for disabled people in Pakistan, and a lot of stigma attached to chronic illness.

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

Please contribute what you can to help Nevra to pay for:
1) Cost of medications including saline IV to mitigate symptoms for one week $15
2) Cost of MCAS-safe foods for one week $100
3) Cost of her carer for one month $150
4) Cost of temporary safe accommodation for one week $700
5) Cost of laparoscopy surgery $4000

If you don’t have cash, please consider giving your time:
Nevra is pleading for able-bodied or only mildly affected pwME as volunteers to assist with fundraising! Her current crew are all severe and we would appreciate back-up especially people prepared to help with social media updates or admin.

Nevra needs to pay for the ongoing medical care she receives from her GP and local clinicians as well as transport to appointments. She has to pay a nurse to administer regular IV saline plus iron infusions, Vitamin D3 and B12. She depends on a paid carer for help with showering and food preparation.

Nevra was hospitalized in order to be tube-fed in April 2020. Her MCAS sensitivities mean that finding calorically dense food that won’t trigger an allergic reaction is a constant struggle.

Although the psychological issues she experiences are mostly due to PMDD which has a biological basis, Nevra has developed vital coping strategies with the help of a therapist whose support is also essential.

Nevra inspires us. She advocates for herself in a world that constantly discriminates against disabled people, especially those with misunderstood illnesses. It takes courage and vulnerability to reach out for support. And despite her tortuous symptoms, she also supports her sick friends as much as she can.

She continues to battle valiantly, where many others would have faltered. Please show her she isn’t doing this alone.



Nevra at the Unrest Screening Q&A Karachi, Pakistan by #MEAction Network
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Fundraising team (5)

Adrian Bamforth
Organizer
England
Ashley E. Hultman
Team member
Ádhamh Ua Catháin
Team member
Jo Lee
Team member
Valarie Scappace
Team member

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