Esers Medical Fund

* * * Türkçe tercüme için lütfen bu linki tıklayın:  
         Eser'in Sayfası

**First of all I would like to thank Esers close friend, the wonderful Suzi Oram-Aylward for making this page happen as well as taking the time to sit with Eser and myself to write down her story for this page. 
Also thank you so much to Janset Mufti for translating the write up to Turkish! **

While we are all grateful for the public health care system in Canada when it works, there are clearly unfortunate situations where it does not.
Every day across the country, many people are afflicted with rare diseases that are often hard to diagnose. For women this can be particularly difficult when their physical ailments are dismissed and attributed to depression or some other psychological disorder. A modern twist on the old hysteria diagnosis.
The gender gap in the treatment of pain and ailments pertaining to the reproductive system are well documented, and the bias is against women. Physicians are more likely to tell women that their physical symptoms are caused by emotional or psychological factors.

Over fourteen years ago Esers symptoms began to occur. The amount of food she could eat was decreased extremely over time during these 14 years and she also began to suffer from extreme swelling whenever she attempted to eat or drink food or liquids of any kind. It came to a point about four years ago where she became very bloated, so much so that she retained up to 23 pounds of water weight, her legs went blue, her feet gone numb and had severe pains from her spine up to the base her head. As a result she was terrified to eat and lost a significant amount of weight. She was in almost constant pain.
Unable to diagnose her, physicians chalked it up to depression, anxiety and anorexia. She was put on a specialised diet and antipsychotics with the promise that she would soon get her appetite and strength back. It never happened. She tried to hide the symptoms, embarrassed that it was in her mind. She was unable to work and became isolated at her home fearing prejudice and judgment about her ailments. In pain for 14 years of her life and unable to get answers, she began to feel hopeless.
In the spring of 2015 Eser began vomiting blood and lost the ability to swallow her own saliva. Her partner Husayn took her to emergency where she was given anti nausea medication and sent home without any assistance or recommendation. 
It was obvious to both of them that this was becoming a life or death situation and they were not getting the treatment they needed. Desperate for answers and struggling to survive, she had no other choice but to return to her country of birth, Turkey, where much of her family still resides.
In Istanbul she was finally diagnosed with Superior Mesenteric Artery (SMA) syndrome, also known as Wilkie Syndrome, a digestive condition which causes partial or complete blockage of the duodenum. They did a laparoscopic surgery to repair the damage which was not successful. The operation damaged her nerves, cells and organs in irreparable ways. Her condition went from bad to worse.
Desperate to find answers, she began searching online to explore other options. This is when she found Professor Scholbach, a doctor in Germany with expertise in many vascular compression syndromes. She flew to Germany to meet with him. She was diagnosed with 6 interrelated conditions – Wilkie Syndrome, Severe Nutcracker Syndrome of the Left Renal Vein, Median Arcuate Ligament Syndrome also called Dunbar’s Syndrome, May-Turner Syndrome, Pelvic Congestion Syndrome, and Lordosis. During Eser’s third operation in Germany it was discovered by Professor Verreet that she had Annular Pancreas as well. In a follow up appointment with Professor Scholbach after that operation he found that her splenic vein was compressed and enlarging it as a result (Splenomegaly), and also that her left renal vein was being further compressed by her right renal artery. One of these diseases is considered rare and potentially life threatening, combined together its a miracle that she is here today. They are difficult to diagnose and those affected are often young. However, successful treatment is possible.
Professor Scholbach specialises in these syndromes and the connections and the correlations between them, and he was the first person in over a decade to finally give Eser hope. Since her diagnoses she has undergone 3 extensive surgeries, each comprising of multiple complex procedures, and the next one is scheduled for this coming September. Because she was not diagnosed here in Canada, the medicare system has not covered the cost of the surgeries and treatments. She and her partner have had to bear the costs and are now deeply in debt and struggling to survive. They are continuing talks with Canada Medical Services Insurance to get help, but no luck so far. The science is still developing on how to treat these syndromes and her case is at the forefront of medical research.
Eser second operation from Vascular specialist, Professor Sandmann in October 2015 consisted of the reversal of the operation performed in Turkey, an Infrarenal Transposition of the Superior Mesenteric Artery for both Wilkie and Nutcracker Syndromes, Interposition polytetrafluoroethylene (PTFE) - Graft of the right iliac artery with resection of the intraluminal fibrous spurs and vein patches of the left iliac vein for the May-Thurner Syndrome, as well as an A-V fistula between the superficial femoral artery and great saphenous vein to assist blood flow.
Eser’s third operation from Professor Sandmann and General Surgeon Professor Verreet in March 2016 consisted of a Partial Gastrectomy, removing a large portion of Eser’s severely enlarged stomach, a Partial Pancreatectomy, removing the head of her pancreas that had been wrapped tightly around her duodenum, and the reduction of fibrous tissue in the Nutcracker region to regulate blood flow to her renal veins.
Eser’s upcoming surgery in Germany will be performed once again by both Professor Sandmann and Professor Verreet. This surgery will be focused on relieving the compression from the left renal vein by the right renal artery and also the splenic vein, as well as a gastrointestinal procedure that will hopefully allow Eser to eat food once again and get her bowels working.

Through this GoFundMe we want to raise money to help Eser and her partner. We also want to raise awareness about the conditions and to highlight that families affected by these catastrophic costs associated with these diseases are often left on their own.


Please visit the following Facebook group for more information and updates on Eser’s odyssey: 

Esers Facebook Update Group Link 

Listed below is Professor Thomas Scholbach’s webpage which includes very informative publications on vascular compression syndromes. There are also links to pages regarding all of Eser’s conditions as well as surgical procedures.

Professor Thomas Scholbach Webpage


Wilkie Syndrome

Nutcracker Syndrome

May Thurner Syndrome

Dunbar's Syndrome

Pelvic Congestion Syndrome

Lordosis

Annular Pancreas

Left Renal Vein compression by the Right Renal Artery

Splenomegaly

SMA Transposition

 Interposition PTFE-Graft of the Right Iliac Artery 

Resection of the intraluminal fibrous spurs and vein patches of the left iliac vein.

A-V Fistula

Partial Gastrectomy

Partial Pancreatectomy 

Roux-en-Y Gastrojejunostomy

Renal Vein Thrombosis



Women’s health and gender stereotypes:

Link 1

Link 2

Esers first visit with Professor Thomas Scholbach

Eser and Professor Wilhelm Sandmann (Vascular Surgeon)

Eser and Professor Patrick Verreet (General Surgeon)

Eser going into her second operation

Eser and I  :)

Eser a week into ICU after her third operation

:)