Chronically Nevra

Hello everyone! We hope this updates finds you well. We apologize for the delay in updates as Nevra’s situation has been quite unbearable and we are definitely behind on updates. We will start by uploading the receipts for December. Thankfully, throughout December, Nevra had access to MCAS friendly foods. She continued to order from Mantaha (her nutritionist) and Gluten Free Foods PK (Feel free to check out their Facebook or Instagram) pages, all receipts and correspondence is attached. When

she needed food immediately she ordered from Espresso PK or N’ECOS as they are the few gluten free options in her city. She has saved every digital and physical receipts (and sometimes both!) which is no small feat for a person as sick as Nevra. She appreciates your donations as well as support a lot. Part of December’s expenditure includes household items and toiletries (water bottles, toothpaste and razors for shaving) as well as medicines and supplements (plus delivery or shipment fees) She also needed to prepare for her move in December as she did not have a place to live permanently and had to buy luggage, get some medical tests, and appointments as well as legal expenses and paying her patient advocate and social media manager monthly. All receipts are attached below in the video with a total of every slide. The total for December comes up to $1,480 USD or 2,61,475 PKR. Being disabled and chronically ill is not cheap at all. Nevra couldn’t make it through without your help.

Nevra’s food expenditure from November and an appointment.

If you have MCAS, ME and similar conditions like Nevra and are disabled she highly recommends Foodpanda and pandamart to get groceries and food delivered to you. She also orders her allergen free food and soups and juices from Gluten Free Foods PK, Greenos, N’ecos, Mantaha The Nutritionist, Espresso, Esquires…all receipts are in the video always.

Food & groceries total:
PKR 44,482 equals to USD $249.69

Nevra’s doctor’s appointment
PKR 6,000
USD $33

Nevra is currently in a difficult situation and trying to exit her current living situation and we will need your help to fundraise for her to help cover rent, rent deposit, lawyer fees, therapy, and a caregiver. We will reveal more when we are able to.

Endless gratitude. Nevra is hanging in there physically and mentally thanks to you. We are very close to getting her to a safe home with a caregiver and to a specialist abroad for her life-threatening PMDD and G.I issues

Content warning: emet, vomiting, medical gaslighting, trauma.

Hello, I am Becca. I’m Nevra’s Social Media Manager. This update is from October and there has been a major delay in updates, because Nevra was too sick to manage social media.
Even with eating above 4000 calories, she is continuing to vomit and lose weight and her PMDD is worsening her other comorbid conditions.

That is what I will be helping her with and that is one reason we need to keep raising funds as Nevra is too ill to do this without help. Nevra has had a slight improvement with health because of a beta blocker she has been doing her best to have copies of digital and paper receipts. This was the intention all along but she is too sick to do it by herself. Now that I am here we will be posting monthly updates and doing expenditure videos with receipts. She is currently requesting that her doctors give her receipts as well as her MRI. Nevra is communicating with the hospital administration to get those receipts. Please understand that due to privacy issues we are not allowed to share appointment or doctors’ information. Nevra is working on this too. Her counselor and PMDD support psychologist are okay with her sharing the receipts.

Medical advocate is $100 per month taken on as low bono case, cannot provide receipts due to confidentiality and cannot reveal patient advocate’s name on social media.


Same with her complex diseases doctor for EDS and ME and POTS, 150$ per consultation. For the sake of protecting his privacy we cannot name him as well as her other specialists.


Thankfully Nevra has found a way to get supplements from the UK and medical disability aids through a cargo warehouse that takes orders for Pakistan.

These supplements are often bought every 2 months with a delivery fee, receipt attached for CO NAKS warehouse. We also are working on an Amazon Wishlist so people can choose to donate by way of buying Nevra’s essentials and supplements.

In October, she was told she needs to fundraise for Rifaximin, Humidifier, pelvic floor therapy sessions, sessions with & nutritionist. Currently we also need to funds for safe housing for Nevra (the next update will reveal more).


We need to continue fundraising for her daily survival needs such as MCAS food (150-250$ a month), appointments with complex disease specialist (150$ per appointment) social media manager (150$ per month) nurse for IV infusions, uber transportation and medicines.


Unfortunately, as shown in the receipts everything adds up to a staggering amount. Food without additives, gluten, rice, caffeine, sugar, and other ingredients are more expensive.
As some of you may know, finding food and supplies that don’t cause reactions can be both difficult and expensive. Many people within the disability community have named this additional cost the Crip Tax. Nevra’s Mum herself is disabled and doesn’t cook. Nevra has to manage her situation by herself or hire help locally which is also expensive.
Even if Nevra is vomiting 50% of the food she is still somewhat able to gain weight on it but doctors are still trying to find the root cause.

One session of therapy costs 110 pounds. Her PMDD therapy is expensive at 110 pounds per session; it’s also what sustains her until the doctors can approve her for hysterectomy.



Having to choose between food, therapy, and electricity is not sustainable and adds to the stress she’s under. Unfortunately, while we have raised a lot over time, GoFundMe does not display expenditures over the last year, and her needs are ongoing.
Whilst we hate to keep asking, this is the reality of her situation currently. I wish it was different. Funds have dwindled due to day-to-day living expenses, and she needs to keep a small amount in reserve for ER emergencies.

Any amount of funds contributed would be extremely helpful right now. Thank you so much for your kindness and generosity. Nevra is also trying to get accepted at a university hospital abroad and working with an attorney on this, the specialists at the aforementioned hospital are well-versed in dealing with PMDD, MCAS, ME, EDS and POTS. If we can manage to get Nevra to travel there and have the necessary tests run we have a very good chance of saving her life. Her local doctors agree that the tests and compounded medicines she needs are not available in Pakistan.

April 27, 2021
By Team Member
Thank you so much for your donations to Nevra. She is able to get supplements and medical equipment sent to her via a UK cargo house. She is also able to get groceries daily, locally.

Nevra: “I really want to say thank you for your help, none of this would be possible without your kindness, generosity and community spirit.

Here’s my gift to you:

Happy new year in 51 languages. I crashed hard after making it but I hope you have a wonderful year and stay safe from COVID-19. I send love to you and your families.

Here’s the Behind the Scenes of the video:

I’m sorry I cannot update daily, as we’re regrouping to find help for me. It has been extra hard because of the pandemic and we’d like to thank you once more for being here.”

February 27, 2021
by Team Member
Last month, we reported that Nevra’s condition was worsening and she was jaundiced. We advocated for her and was able to get her doctor to order an evaluation of her liver. Her liver is damaged. She tested positive for Hepatitis A, from which she is currently recovering. Your donations helped to cover the costs for the testing.

This month, in addition to Nevra’s ongoing monthly costs, such as

-Telehealth complex illness specialist follow up appointments $130 each about 1 per month
-Assistants on the ground in Karachi and abroad: $300 per month
-Therapy: Approximately $40 per session. Nevra has 2-3 sessions a week which is $80 or $120 and $320 per month
(* depending on how often Nevra can do sessions)
-Food: Approx $407/mo
-Supplements: varies but $200 per month
-Caregiver: $10 per shower/hygiene services
– Local appointments & hygiene products- $125

That’s a total of $1400 per month to manage Nevra’s care and keep her alive. Remember, just because Nevra’s campaign has made $9000 doesn’t mean the money ia still there. It goes to her continuous care at $1400/month.

Nevra is without central heat, and the weather has been unseasonably cold in her area of Pakistan. She needs to purchase warmer clothes to stay warm, so your donations will help to clothe her.

Members of Nevra’s support team are having to step down for personal health reasons, so Nevra is in need of a patient advocate as well as a remote female assistant to help her stay organized and help with running her campaign. If you can help or know someone who can, please contact us.

December 3, 2020
by Team Member
Since September, Nevra’s condition has worsened. For over a week, she has been vomiting and is becoming jaundiced.

While we hope Nevra can be supported locally, we are currently researching treatment options in other countries for when travel restrictions are lifted. In addition to Nevra’s continuous care including the need for higher skilled nursing care at home, we are planning to pay for travel, medical, and living expenses for Nevra while she is in the country getting diagnosed and treated.

Here are a typical month’s costs for Nevra’s care:

-Telehealth complex illness specialist follow up appointments $130 each about 1 per month
-Assistants on the ground in Karachi and abroad: $300 per month
-Therapy: Approximately $150 per month
(* depending on how often Nevra can do sessions)
-Food: Approx $407/mo
-Supplements: varies but $200 per month
-Caregiver: $10 per shower/hygiene services

For the past couple weeks, Nevra has been staying at a friend’s house, and her health has seen some improvement because she is in a mold-free room. She did catch a severe cold or flu while visiting; however, she is still able to fight it better because she is not also battling adverse effects from mold. It is suggested that Nevra move to a mold-free environment.

Thank you so much for your donations so far! It is continuing to pay for doctors appointments and consultations for Nevra, as well as continuing to provide her with proper nutrition. It has also helped to pay for several medical tests to help determine the cause of Nevra’s current vomiting. Please continue to give your support.

June 3, 2020

Team Member
Dear friends,

Nevra recently found out from the hospital lab that there was a PICC line infection, and the line wasn’t being cleaned properly. She has been on antibiotics for two weeks and antifungals for a week to fight the infections. 72 hours after stopping the antibiotics, the infectious disease specialist had told her to do a blood culture test. She completed that test and is waiting on the results. So far Nevra’s fever has subsided, and the tachycardia is better too. Those are bright spots, but Nevra remains in a precarious, urgent situation

However, Nevra has unfortunately lost the 3 kgs that she had gained in the hospital whilst on TPN, and she is back to square one. We are so grateful that Nevra was able to afford testing and treatment for life-threatening bloodstream infections. It could have gotten much worse, but that was avoided thanks to your donations.

Nevra is discouraged that she was not able to continue with the TPN nor the PICC line and is weighing her options on what to do next. Her doctors tried their hardest to figure out what is going on but are at a loss. She is looking at Cleveland Clinic Abu Dhabi and Germany among other places to get tests run to see why she cannot keep weight on, as she is back down to a dangerously low weight and risks organ shutdown. Nevra’s liver function is poorly right now due to the medications and iv antibiotics, so it’s important that she gets supplements for liver support also. Your donations will help accomplish these tasks.

Please continue to give and share Nevra’s story as she tries to navigate the next phase of her care!

— Team Nevra

P.S. Since GoFundMe’s platform cuts off photos, we are working on a Google doc where you can view all of them in full. The one posted here is in PKR rather than USD; her iv meds came to around $165 USD per day.

June 16, 2020
by Team Member
Here is a video from 2018 of Nevra singing a Greek Christmas carol. Nevra enjoyed singing and really misses doing it. Singing kept her going all these years fighting & managing these diseases and now after two words she’s out of breath. She enjoyed singing for other patients and always dreamt of singing professionally.

She needs your help to receive treatment for her condition, so she can get better and enjoy the things she used to do.

#SaveLizNevra

June 23, 2020
by Team Member
Here’s where some of your donations to Nevra are going. Due to Nevra’s gut issues and suspected mast cell activation disorder it’s really important that she have access to foods she tolerates. Unfortunately, she often only has access to food that makes her very sick.

Thank you so much for your donations so far! Your donations are helping Nevra get the foods her body can tolerate best, including juices and plant-based milks. These are very expensive in Karachi and the stock is limited, but it is thanks to your donations that she can afford them. Your generosity is much appreciated!

https://www.gofundme.com/f/save-our-nevra-l

#SaveLizNevra

July 12, 2020
by Team Member
It has been awhile since we gave you an update on Nevra.

Lately her symptoms have included restless legs, severe neck pain and issues, problems with lying on her hips, violent jerks, breathing problems, low blood sugar, low blood pressure, night hunger.

Her medications makes her bradycardic, plus she has low blood pressure. Her legs, hips, and arms feel as if they are going numb, but she wants to keep moving them.

She slept with her legs up to improve POTS and circulation, and it helped. Her pain and bleeding got worse though. Her blood pressure was low, so she feels we need to look into having her evaluated for POTS.

There has been a lot happening with the team as well. Progress is being made. Members of our team are researching international charities and NGOs who can assist Nevra in getting the help she needs.

Your donations enabled Nevra to have a consultation with a complex disease specialist for her condition. He advised Nevra on her daily schedule, GI issues, and other symptoms. He also gave her suggestions for things she can do now until she gets the help she needs.

Your donations are also helping pay for Nevra to get the proper nutrition she needs. We have included 3 receipts from a week’s worth of food. (GoFundMe will only allow 3 photos with updates.) Totaling US $76.46 for the week.

Thank you so much for helping Nevra!

August 7, 2020
by Team Member
Kab tak کب تک؟… Nereye kadar? Until when? nə vaxta qədər? μέχρι πότε? कब तक? Deri kur? Go dtí cathain? Do kada? تا کی؟…¿cuánto tiempo?…jusqu’a quand?Wie lange? Hur länge? #UntilWhen #when #SaveLizNevra

September 5, 2020
by Team Member
Happy 25th Birthday to Nevra! Her birthday is this month. Please feel free to comment and share your birthday wishes with her. She is very thankful for all of your genorosity and support.

In the past month, your donations have helped pay for several doctors appointments for Nevra, as well as continuing to provide her with proper nutrition. Although she has not gained any weight, she has not lost any weight. We have also scheduled consultations with a nutritionist specialized in working with multiple allergies, a complex diseases doctor, a MALS doctor for possible travel to Germany, and hired two coordinators to help Nevra with her campaign and local care.

As some diagnostic tests and treatments for Nevra’s complex condition are not available in Pakistan, we are currently researching treatment options in other countries and saving funds to pay for travel, medical, and living expenses for Nera while she is in the country getting diagnosed and treated.

Thank you again for your continued support and don’t forget to wish Nevra a “Happy Birthday!”

Before I attempt to update you on what’s happened since my unexplainable weight loss journey I wanted to gather everything I could from the TPN fundraiser, expenditure per month and things such as receipts so they don’t get lost. I’ll also attempt to include video updates as well as monthly ones. We are going in chronological order all the way from the start! #SaveLizNevra

April 27, 2020 by Team Member

A milestone: we’re celebrating raising the first thousand dollars of this campaign! Yay!First, a huge THANK YOU goes out to everyone who has contributed to and shared the campaign so far from all of us here at Team Nevra. It’s contributions, tweets, retweets, posts, and shares like yours that have made the difference. We’re grateful that Nevra is being surrounded with so much love and kindness. It gives her hope to get through each day.Sadly, Nevra had an extremely rough night. The positives in all of this are that she has now been admitted to the hospital, and we’re in close contact with her care team. We trust that she is in good hands. While she has been shaken by her symptoms and conditions lately, her steely resolve to survive comes shining through in spite of everything.Let’s keep doing what we can to support her, to share her story, and to ask people who have extra during this time to help not only stabilize Nevra, but to save her life from continuing to deteriorate.We love you and thank you for your generous spirits, Nevra supporters!– Team Nevra

Another day and almost to $2,000 USD! Nevra has gotten a PICC line and she has a special message for you all!– Team Nevra

Message from Nevra in the hospital

Edited to add a video by Nevra on her status from today, May 19, 2020

Nevra’s progress video for today, Tuesday, April 28. She has total parenteral nutrition (TPN) now thanks to your contributions and support!

May 13, 2020
Team Member
All,

Nevra is struggling a lot right now, had an ER visit, and had a COVID test, which was negative. However, we don’t know if it is a false negative.

She has posted a video here about what’s going on. Team Nevra will update the campaign with photos of receipts of what has been spent so far. Thank you for your continued support, good wishes for Nevra Liz, and sharing the campaign on Facebook and Twitter.

— Team Nevra Liz

May 15, 2020
by Team Member
Nevra currently is at home and has had an infectious disease specialist appointment today to assess her infection in the blood and to form a plan of care. She will need extensive testing and still needs a CT scan, among other imaging. She has a fluctuating fever ranging from 100 – 104 and is receiving antibiotics at home via her PICC line. The COVID test was negative, but we’re unsure if it’s a false negative.

The funds from this campaign thus far have been used to pay for her hospital stay to place the PICC line, labs, TPN, home health care up to this point, and an ER visit.

Those funds are almost used up and have been paid to AKU hospital. We’ll need your help to keep pressing toward our goal and to pay for further critical care. Receipts will be uploaded.

Your donations matter––any dollar amount is appreciated, as well as shares and boosting on social media!

$500 donation buys needed imaging like CT scan plus transportation or 1 day in the hospital
$200 buys TPN for almost a week
$125 donation buys injections at home for a day
$50 donation buys a specialist or PCP appointment and labs
$30 buys 1 day of TPN
$25 donation buys 1 day (24 hrs, 2 12-hr shifts) of in-home nursing care
$10 donation buys IV hydration and antibiotics
$5 donation buys syringes to flush PICC line

May 19, 2020
by Team Member
Thank you to all who have given so far! We have hit the $5,000 milestone! We also have an update on Nevra’s condition.

Nevra has a blood stream infection and candida in her blood. She’s on IV antibiotics and antifungals. constant blood draws for tests such as blood culture and an echocardiogram to check if any fungi has reached the heart. Eyes are swollen and red and she cannot move sides without her eyes hurting. For now there is no fever and tachycardia is gone.

Blood culture and other tests such as electrolytes, liver function, magnesium, phosphorus and triglycerides and complete blood count will need to be done too.

Please continue to give and share Nevra’s story. Thank you!

May 20, 2020
by Team Member
Nevra has a video update and clarification on how the funds from the old and new GoFundMe fundraisers have been used and what funds are still available…

Nevra Elis. The girl behind the fundraiser with biomedical demands.

Using my pain as a catalyst for strength means making a commitment to myself to ensure that my joy will be greater than my pain one day…Or as my 7 year old self used to say “I’ll make my life as great (in abundance) as my pain, if not greater” – Nevra Elis

Indeed, who Is She?

Yes, who is this person in question? We see a picture, we see a quote. Yet is it enough to identify her? Where do we begin? All that she is or all that she isn’t? Do we try and introduce you to her through her chronic illnesses, gender violence and trauma? Recent innumerable ER trips? Countless months and years of being bedbound? Wait, maybe we can tell you about the years she worked as a language tutor or as a full time advocate for the #MEAction Network – translating, holding events showcasing the Sundance festival award winning film Unrest. That always helps people see patients as “valuable” and not lazy. We tend not to help the invisible if we cannot relate to them. Or should we tell you about the dreams she lost and how she saw herself disappear in order to reach the wider public? In hopes to show you something which is not entirely foreign so as to forge a stronger relationship with our girl.

But I’m talking about me. Yet why do I use “we”? I have the power to address you directly yet I feel more comfortable in telling you my story as if it is someone else’s, after all, maybe I could escape the pain of processing all the emotions attached to my physical and medical trauma. All over again. Maybe that’s the point of this bloody blog.

Or maybe, as a child, the pronoun “we” gave me the power to think objectively and save me from my loneliness, so I could protect myself, even if as a bystander, telling myself that I did not deserve the treatment that I was subjected to.

You see, sometimes, a simple pronoun can do the trick for you.

Yes, I’m Nevra Elisavet. Or Liz, Lizzy, Nevra, Nevvie, Elis. I am a survivor (although I wish to be a thriver!) of violence in many forms; medical, mental and physical. It all started when I was 5/6ish or maybe even long before that. Or long before I was born. It continued – and it continues all the way to the present day. I cannot attribute one cause to my suffering — Is it my geographical location? My gender? My lack of funds and economical status? How can I retrace steps which aren’t even my own yet have put me where I am? Should I even attempt to try?

Yet here I am. One way or the other. Abuse after abuse, trauma after trauma. Nevra lives. She’s Chronically Nevra. Unexplained weight loss, hell, she would be in a hospital with failure to thrive if she was in another country with that weight of hers (33 kgs!) it’s been her life for more than a decade now. We are talking about 16 years of suffering – physical, emotional and mental. Yet here she is, repetitively her. Chronically her. Chronically Nevra.

Most of you might know her from the fundraiser that renowned #pwME (Patient w/ Myalgic Encephalomyelitis) & advocate Allison Orr helped put together in hopes to save her life and then another #pwME & advocate’ Ashley Hultman ‘s initiative “Save Liz Nevra” https://www.gofundme.com/f/save-our-nevra-l

You have only read snippets about her personality on the fundraiser page but mostly you have been kept up to date about her health situation. You might have been wondering how she does it, you know, exist…

The truth is…so do I. Which is why I started this blog, to finally speak to my donors, my friends and my doctors about more than just my biomedical grievances (although that WILL be the main focus of the blog)

I think it’s time you heard from me, one on one. I don’t know what all of this will amount to or how long I will have the “energy” to keep up. I just want my voice to be heard (oh, we’re on first-person pronouns again..must mean my emotions are leaking through) somehow. If Liz is indeed saved, then perhaps we can all know HOW and if not, then again…there will be a voice left behind, chronically speaking and switching between first and third person pronouns.

This hodgepodge of a blog also hopes to provide donors with transparency with tracking down where exactly the funds are going each month, what kinds of testing Chronically Nevra needs, what medicines/supplements she uses or has used, what chronic illnesses she has and her entire medical history. Let’s face it, we are not going to cover all of this sh*te in one blog post (Sorry, profanity and bad humour are kind of what get me through this…oh, and gratitude)

So let me say, to all my donors, how incredibly grateful I am that our lives have been connected through my suffering. That I am alive exactly at the same time as you. And to my chronic illnesses warriors, even though I wish we would have met under different circumstances, I couldn’t wish for a better community to be on this journey with.

To my friends, to my sisters and brothers, to my partner (although separated by distance), I’m eternally grateful.

Chronically yours. Chronically Nevra.

P.S

More on how I survive later…

We’re back to third person pronouns. She’s crashing. I do see a flicker of strength though…but those POTSY fingers (basically wrecked with bad circulation, turning blue) and that foggy brain is giving away. Until next time.