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The Icelandic Society for the Nervous System

The Story

ISCI’s mission is to be a leading advocate of advances in the treatment of spinal cord injury (SCI), foster global awareness of this serious condition and raise funds for medical, scientific and other endeavours aimed at curing SCI patients. Another prime objective of ISCI is to provide a centralised resource for information on function restoring therapies being developed worldwide and to act as a focal point for pioneers in the SCI field.
The Institut of Spinal Cord Injury (ISCI) was founded on 11 December 2007 at the initative of an Icelandic mother, Auður Guðjónsdóttir, who has for twenty years campaigned strongly for an Icelandic led international effort to improve spinal cord injury (SCI) treatment. Her SCI advocacy efforts and perseverance in the face of adversity have drawn widespread attention. The Icelandic government, businesses and individuals have joined forces to launch ISCI in support of her cause.

At the opening of ISCI, Iceland’s Minister for Health at that time, Guðlaugur Þór Þórðarson, remarked that by establishing the Institut Iceland could be opening a path for other Western countries to champion specific health causes – by raising funds and channelling them to defined research areas and information dissemination at an international level. On the same occasion, former President of Iceland Vigdís Finnbogadóttir said that a well educated and prosperous nation advancing the cause of SCI patients globally could benefit the international community enormously.

In 1989, a 16-year old Icelandic girl, Hrafnhildur Thoroddsen, and her friend Harpa Rut Sonjudóttir, were on their way to start the first day of their summer jobs when their car collided with a bus. Harpa was thrown out of the car, broke her neck and died instantly. Hrafnhildur was caught between the car and a rail and was very critically injured. Her spine was completely broken and the lower part of her body was almost wrenched from the upper half. In short, she was almost cut in half, but survived with multiple injuries.

For the first six weeks following the accident, Hrafnhildur battled hard for her life. She was kept in a medically induced coma and on a ventilator while enduring one setback after another, including lung collapse, kidney failure, gangrene in her legs and heavy bleeding.

Another severe blow came when Hrafnhildur was woken up and proved to have lost control of her hands due to severe cramps, in addition to being deaf, dumb and paraplegic, i.e. paralysed from the waist down. Hrafnhildur’s mother, Auður Guðjónsdóttir, a trained surgical nurse, maintained a vigil by her daughter’s bedside throughout this ordeal. Days and nights she watched over her child, while making use of her extensive medical knowledge and connections within the Icelandic healthcare system to the best of her abilities. She was absolutely determined that Hrafnhildur would live. Despite these immense setbacks, Auður resolved early on that she would pave the way for her daughter in her profoundly changed condition, whatever the situation. Hrafnhildur would not end up in an Institut, alone in her dire need.
Guðlaugur Þór Þórðarson

A life-altering experience

When Hrafnhildur had pulled out of her critical condition, another struggle took over – the task of building up her remaining physical functions. During her physiotherapy, it emerged that the fracture in her spine had not grown, causing major complications. Mother and daughter therefore travelled to Sweden where Hrafnhildur underwent spinal fusion surgery. The trip to Sweden was the first of an extensive series of overseas trips to find help for Hrafnhildur.

SCI permanently and profoundly changes the life of the person sustaining the injury. Nothing is ever the same again. Nothing is ever easy again. The entire region of the body below the injury is paralysed, such as the lower limbs, the inner organs, e.g. the bladder and colon, and the reproductive organs. Respiratory function diminishes or stops altogether in people with severe paralysis, and sensory function, the body’s warning system, is lost. This is one of the most serious concerns – people with paralysis can suffer bone fractures and various internal injuries that go undiscovered until they reach an advanced stage. But time passed and had healed many of Hrafnhildur’s injuries after two years. Remaining were her paralysis and emotional scars due to her condition and the shattering experience she had gone through just after turning sixteen. Hrafnhildur’s psychological state had reached a point where she had lost the will to live and was pleading with her mother to assist her suicide. Her depressed state of mind was utterly heartbreaking for Auður. But in the face of this distress, Auður resolved to take things into her own hands. She would have to give Hrafnhildur her joy of life and hope again to enable her to overcome these tremendous obstacles. Auður promised Hrafnhildur that she would go to the ends of the earth to find help for her, as there must be somebody somewhere who could help her get on her feet again. She also knew that she was her child’s only hope. Defying all her distress and exhaustion, Auður therefore set off armed only with her maternal love to conquer the world for her child.

Searching for a cure

Auður engaged in intense correspondence by sending postal letters, as this before the advent of the internet and e-mail. Due to her profession as a nurse, she had certain ideas about where to seek out information. She found various addresses and wrote letters to doctors who were leaders in the field and to major spinal cord injury associations in a host of countries. In most cases she received no reply or an apology such as, “Unfortunately, I’m unable to help you.”

Three years after Auður wrote her first letter, she received a reply from Dr Michael Rask, a US orthopaedic surgeon, who told her that a medical conference was to be held in Las Vegas. One of those invited to the conference was the Chinese orthopaedic specialist Dr Shaocheng Zhang. Dr Rask was hopeful that Dr Zhang might be able to help Hrafnhildur and invited Auður to come to Las Vegas to meet the Chinese specialist, provided that he would be given permission to leave China.

Auður prepared well for her trip to Las Vegas. She would give it her best shot if there was any remote chance of help. As part of these preparations, the metal components with which Hrafnhildur’s spine had been fused together in Sweden were removed in order to obtain reliable scans of her spinal area. Other preparation included having Hrafnhildur’s medical records translated from Icelandic into English. In September 1994, Auður set off to Las Vegas carrying her child’s medical documents in her arms like her most prized possessions.

Once in Las Vegas, Auður met Dr Rask, who proved to be confined to a wheelchair himself. She felt that this explained why he had shown her so much understanding and provided such excellent help. On the next day, Auður met Dr Zhang, who had been permitted to attend the conference by the Chinese authorities. He was amazed when a lady from Iceland popped up and beseeched him to help her child.

The Chinese doctor

After examining Hrafnhildur’s medical reports, Dr Zhang’s initial prognosis was that he would probably be unable to help since far too long a time had elapsed since her accident. But having made her promise to her daughter, Auður felt she couldn’t let him go and said: “Dr Zhang, she has nothing to lose.” Dr Zhang comes from a region steeped in traditions of mutual help between parents and their children. After a long pause, he told her that she was a good mother and could bring her daughter to China for an examination, if she wished.

In February 1995, Auður and her husband took their daughter halfway around the world to Shanghai for Hrafnhildur’s examination and possible surgery. At this point, Hrafnhildur was very thin and frail, weighing only 28kg. Upon their arrival at the military hospital where Dr Zhang worked, he examined Hrafnhildur and concluded that an operation was technically possible, but he could not promise any results. He said that he was unable to operate on Hrafnhildur immediately as she would have to be in a better state of health, and that she and her mother should return to Shanghai after six months. Before leaving for Iceland, Auður was allowed to watch Dr Zhang perform two operations on Chinese patients comparable to the ones he would be performing on Hrafnhildur. Being an experienced surgical nurse, Auður could see that he was a very competent surgeon, which gave her full confidence in his ability to operate on her child. Since the operation on Hrafnhildur would be very extensive and require much post-operative treatment as well as a long stay in Shanghai, and given how gruelling a trip to China was for Hrafnhildur, Auður suggested that Dr Zhang come to Iceland and operate there.

Dr Zhang was pleased by the request. He saw an opportunity to travel to a country he had never even imagined visiting. However, travel to and from China was restricted, so he would only be able to visit Iceland by official invitation from the Icelandic government.

Dancing with the dragon

Once back in the Iceland, Auður asked orthopaedic surgeon Dr Halldór Jónsson to work alongside Dr Zhang on the operation and act as delegating physician responsible for his work, as the Chinese doctor did not have a medical licence to practise as a physician in Iceland. This request was granted. She then asked the Icelandic Ministry of Health and the Ministry for Foreign Affairs to send Dr Zhang a formal invitation letter. This was also granted.

Auður believed that she could now rest assured of Dr Zhang’s arrival. But this was far from the case. Dr Zhang is a military doctor and the Shanghai military authorities denied him permission to travel to Iceland despite the official invitation. He tried repeatedly to have the decision overturned but without success. Auður called him frequently to check how things were progressing. She had to call the military hospital’s switchboard, which connected her to Dr Zhang's home. Their phone conversations were tapped. The military hospital’s personnel called Auður twice to dissuade her from calling Dr Zhang again, saying that he would not be coming to Iceland. A call was even made to the Icelandic Embassy in Beijing requesting the ambassador to pass on the message to Auður that she should stop calling Dr Zhang.
When Auður felt her hope waning of ever obtaining help for Hrafnhildur in China, she turned to the Icelandic Embassy in Beijing, where Hjálmar W. Hannesson was ambassador. He contacted the Chinese military authorities and worked incessantly on the matter. This was to little avail until the then President of Iceland, Vigdís Finnbogadóttir, paid an official visit to China and met Jiang Zemin, China’s President and commander in chief. Ms Finnbogadóttir personally asked Mr Zemin to grant Dr Zhang permission to travel to Iceland to operate on the paralysed young woman. China’s President granted his consent.

A mother’s love triumphs

Even with the Chinese President’s approval, the military authorities in Shanghai remained adamant in not allowing Dr Zhang to leave China. This state of affairs did not change until the ambassador suggested that the Icelandic President write a letter of complaint to the Chinese President. With all these delays, nine months passed from Dr Zhang’s receipt of the invitation letter until he arrived in Iceland.

But in December 1995, Dr Zhang finally stepped on Icelandic soil, accompanied by another military doctor whose role apparently included ensuring that the specialist returned home to China. The Icelandic ambassador had received the two Chinese doctors upon their arrival in Beijing, escorted them on board a SAS flight and did not let his eyes off the plane until it was on course for Copenhagen. Dr Zhang’s arrival in Iceland drew considerable media attention. Here was a mother who had brought a doctor all the way from China to operate on her paralysed daughter. The Chinese Embassy in Iceland kept a close eye on the matter and sent a representative to be present at the operation. The second Chinese military doctor watched Dr Zhang’s every step.

A year later Dr Zhang returned to Iceland to perform the second part of the operation. Because he had returned home safely enough after the first trip and the Chinese Embassy in Iceland had reported in positive terms to the Chinese military authorities on that visit, arranging the second trip was a much more hassle-free affair. Most importantly, Dr Zhang’s two operations on Hrafnhildur went well and delivered better-than-expected results. Thus, a mother’s love for her child triumphed over massive obstacles. In 2002 Jiang Zemin paid a presidential visit to Iceland, on which occasion Hrafnhildur and Auður got to thank him personally for his assistance.

Other treatment

After Dr Zhang’s successful operations, Auður and Hrafnhildur focused on how they could best build on that victory. They decided to travel to Russia for electrolysis treatment, eventually making a total of five trips to the country, sometimes in baking heat, even with forest fires burning, and sometimes in the intense cold of the Russian winter. Next they ventured twice to France for laser acupuncture, followed by two trips to England for treatment with a spiritual teacher.

Mother and daughter travelled alone together, and their fear that something might go awry was never far off. Before embarking on each journey, Auður contacted the Icelandic embassy in the country in question, informed the embassy staff of their planned itinerary and asked them to help Hrafnhildur back to Iceland should anything befall herself that prevented her from doing so. The embassies were always ready and willing to assist and were a great help to Auður and her daughter. Hrafnhildur always carried in her pocket the security phone number of the embassy in question, which could be called 24 hours a day in the event that she needed assistance.
These trips were taxing on the two of them, partly because a great deal of equipment had to be brought along. Auður and Hrafnhildur were apprehensive about how the treatments would turn out as well as what types of people they would be dealing with. Hence, Auður was never relaxed until she could see the Icelandair plane at the airport just prior to departure back home to Iceland. To her the Icelandair plane signified security – now anything could happen, the Icelandair people would get them home all right.

Gro Harlem and WHO

In her struggle to obtain help for Hrafnhildur, Auður was struck by the scale of scientific knowledge that could vastly benefit people with SCI but was not being used or shared effectively. She was astounded by the failure to apply this wealth of knowledge to develop more effective SCI treatments, which had been stagnant for half a century. Having looked extensively at available treatments around the world and attended numerous international conferences, she came to the conclusion that progress towards finding a cure for SCI was so slow primarily owing to the fact that very limited funds were being spent on research and development in the field compared with other areas of medical science. She observed that no particular interest groups or businesses stood to benefit financially from the discovery of such a cure. Moreover, she found that language barriers, prejudice between geographic regions, arrogance in medical-scientific circles and competition between doctors and scientists for research grants, attention and respect were obstructing the integration and development of knowledge.

Having gone through all the suffering inflicted by SCI upon Hrafnhildur and herself, Auður simply could not accept that a lack of funds in a world of unprecedented plenty, owing to self-interest, indifference and arrogance, could hold up progress. She tried to work out what had to be done to change the situation. Her course of action was to write a letter to Gro Harlem Brundtland, then Director-General of the World Health Organisation (WHO). Auður called for WHO to set up a centralised information resource on pioneering research towards the cure of SCI so that the global situation in the field could be assessed and analysed. Icelandic government officials presented Auður’s letter to Ms Brundtland at WHO’s 1999 Annual General Meeting. Three weeks later, Auður received a reply from WHO requesting her to work with a WHO-sponsored SCI organisation. Auður contacted the organisation but soon realised that it would not take the routes that she felt was necessary to take.

International conference and database

Auður then contacted Iceland’s ambassador in Geneva, Benedikt Jónsson, asking him to meet Ms Brundtland on her behalf, explain the issue to her and request that Auður be permitted to gather information on pioneering SCI therapies and procedures under WHO’s auspices. Ms Brundtland gave her approval.

In late 1999 Auður sent approximately 200 letters to collect information, and received answers from around the world. In 2000, representatives of the Icelandic Ministry of Health brought the information thus gathered to a meeting with WHO officials. Great satisfaction was expressed with the information at the meeting, and a decision was made to hold an international conference in Iceland with the pioneers providing the information.

The conference was held in 2001 under the auspices of WHO and the Icelandic Ministry of Health. A total of 25 experts in SCI treatment were invited from all over the world as well as officials from WHO and the Council of Europe. The conclusion of the conference was that WHO needed to synergistically integrate knowledge from different sources and set up a database on new and emerging SCI treatments and procedures.

After the conference, the Icelandic Minister for Health, Jón Kristjánsson, wrote to the WHO Director-General to give her an account of the conference’s conclusions. In her reply, Ms Brundtland requested the Minister to establish an SCI database. Accordingly, a web-based database ( has been in operation since 2006 under the auspices of WHO and the Icelandic Ministry of Health. Under the direction of Dr Laurance Johnston, the database acts as a focal point for innovations in SCI treatment and procedures. It is available in English, Spanish and Arabic, with Russian and Chinese translations in progress.

God’s trumpet call

Auður believes that pain is God’s trumpet call to awaken the world from its dull slumbers. She uses her experience and that of her child to raise awareness of the seriousness of SCI and has made a huge personal contribution to this cause. She wrote to the queens of the Scandinavian countries to draw their attention to the problem and ask them to promote increased focus of SCI within the health ministries of their respective countries. Queen Margrethe of Denmark answered her call. Auður has written to many others for the same purpose, including His Royal Highness Prince Charles of Wales, Hillary Clinton, the late Christopher Reeves and his friend Robin Williams, in addition to news programmes and TV channels, to name a few notable examples.
Unsatisfied with the overall response, Auður has also made a film documentary on her struggle. The film is named You Will Never Walk Again. Icelandic businesses and individuals donated funds to the film’s production and translations into various languages. Auður distributed the documentary to TV channels free of charge. It has been broadcast in numerous countries and translated into several languages.

Based on her wealth of experience, Auður’s opinion is that current standard practice in the treatment of SCI, i.e. only rehabilitative physiotherapy, is only half a treatment and totally inadequate. She believes that SCI requires emergency treatment and that attempts must be made to cure spinal injuries immediately following the accident if there is even the remotest possibility of restoring life-enhancing function. In september 2008 a large media event was held in Iceland with the aim to collect funds to be used in a new approach of SCI treatment. Colliding with the financial collapse of the icelandic banking sector The Institut of Spinal Cord Injury received nevertheless outstanding support from the icelandic people as well as businesses and the icelandic government. The Institut of Spinal Cord Injury was founded for a worthy cause. Hopefully, Iceland’s contribution to the worldwide search for new SCI treatments will deliver positive results for future generations.
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