Help Alice Kent fund surgery for rare condition

Hi, my name is Victoria, and I'm fundraising for my 19-year-old niece Alice for surgery and treatment for Abdominal Vascular Compression Syndromes. 

 Alice Funded Own Surgery -  Health System Denies Support

It´s May 2022; I´m in a hospital bed in excruciating pain, I can´t eat, I´m nauseous, and doctors won´t give me pain killers. I´m told to go to rehabilitation to deal with my issues! No one is listening to me; I´m in the gastro ward yet have a vascular condition. Doctors aren´t interested in my medical history; no tests are done, no one believes me, I´m losing weight, and I´m feeling angry, hopeless and sad.

I´m told to go home!

 

Six hours later, my parents and I are on a plane heading to Germany...

This is Alice´s story.....

 

Health issues from the age of 14.

50+ visits to ER

70+ nights in hospital beds.

100+ medical-related appointments.

Five times to Germany for medical reasons.

 

My name is Alice Viktoria Kent; I´m your average 19-year-old. I live in Reykjavík, Iceland.

My twin sister and I look identical, but we´re not.

In 2021 I was diagnosed with 5 Abdominal Vascular Compression Syndromes.

I have had health issues since 2016.

By March 2021, I could no longer eat without an NG feeding tube. And with no solutions from the National University Hospital of Iceland, I sought help internationally.

 

In March of 2021, I was diagnosed by a specialist in Germany with hypermobile Ehlers-Danlos Syndrome or hEDS, which can cause vascular compression syndromes. In addition, I was diagnosed with MALS (Median Arcuate Ligament Syndrome), May Thurner (left iliac vein), SMAS (Superior Mesenteric Artery Syndrome), Nutcracker (left renal vein) and Pelvic Congestion.

 

Arteries and veins become compressed, restricting the blood to major organs and causing several depleting health issues.

 

My symptoms have included:

 

- Severe pain when eating or drinking.

- Severe and constant abdominal pain.

- Left flank pain, pain under ribs and back.

- Weight loss, over 12 kilos.
- Malnutrition.
- Constant nausea and vomiting.

- Slow bowel movements diarrhoea and constipation.

- Severe pain in legs, restricting mobility to the point of not being able to walk.
- Severe menstruation pains.

 

I underwent surgery and treatment in Germany in May 2021, which was successful. As a result, I could eat pain-free, my abdominal pain had subsided, and I could walk without pain in my legs.

However, compression syndromes are complicated, I still had some pain in my lower abdomen, and in October, an examination in Germany confirmed a new compression causing severe Pelvic Congestion. Initially, it was manageable with medication and physiotherapy; however, by April of 2022, the pain rapidly increased to the point where it became unbearable despite strong medication and I was admitted to the hospital.

 

I spent three weeks in the University Hospital of Iceland, where my condition only worsened. Despite my medical history of compression syndromes, not one vascular surgeon consulted with me during the 500 hours I was under their “care.”

 

No solutions were found, incorrect medical tests were done, and little compassion, care or understanding was shown. I had lost an additional 3 kilos in weight in hospital.

Feeling hopeless and sad about the lack of care, we decided to travel back to Germany to see a specialist with the knowledge and understanding of compression syndromes.

Following a Functional Colour Doppler Sonographic examination, the cause of my pain was identified. I had severe compression of the left common iliac vein at the lateral and fifth lumbar vertebra.

Analyzing the diagnosis report and considering the severe pain concluded that another surgery would be required.

In total I spent just short of five weeks away from home, including 19 days in the hospital following my six hour surgery.

Before returning to Iceland, I underwent an additional sonographic examination which confirmed a successful operation but also highlighted a large cyst (7cm) on my ovary and an enlarged colon (Mega Colon), very likely caused by the use of high doses of Morphine over a prolonged period.

 

CLAIM DECLINED by Icelandic Medical Health Insurance.

Despite being initially diagnosed in Iceland with MALS, the Icelandic Health Insurance has rejected my claim for medical health insurance for surgery and treatment in Germany. The claim was declined, yet the Icelandic Health Care System could not provide an alternative solution.

 

Therefore, I am appealing to raise funds for my medical bills with associated costs and awareness for Abdominal Vascular Compression Syndromes.

 

 

For the last three years, it has been a constant struggle within the Icelandic Health Care System to gain understanding and to be believed. I have been judged, ignored,  my mother accused of having Munchausen´s by Proxy (faking symptoms) and misdiagnosed me with mental health issues.

 

I believe the Iceland Health Care System has failed in offering care, safety, professionalism, and compassion.

 

I don´t wish for anyone else to suffer unnecessarily as I have, and I will do all I can to help others who find themselves in a similar situation.

Abdominal Vascular Compression Syndromes need more awareness.

 

 

I am deeply grateful for your support.

Kindest regards,

Alice Viktoria Kent.

 

“Not too Rare to Care.”