Europeans suffering from chronic pain share many problems with rare disease patients: lack of knowledge amongst medical practitioners, authorities and policy makers; inadequate treatment; social and cultural stigma; and impact on family relationships. As with rare diseases, there is a huge variety of government policies across the European Union on treatment availability, pricing and reimbursement, and prescription process. Some treatments, proven safe and effective in one country, are not available in others, or not reimbursed at all.
Some patients are unlucky enough to combine both afflictions: chronic pain added to a rare disease. Such is the case of Amanda Leighton-Bellichach, living with Ehlers-Danlos syndrome. Amanda followed her parents from England to Israel at the age of eight. During her two year military service in Israel, she suffered repeated stress fractures, recurring pain, and dislocated joints (one of the common symptoms of Ehlers-Danlos). Unfortunately, this genetic disease was not diagnosed then. Amanda underwent surgery. Six months later, the injuries had not healed and were causing her a lot of pain. Three years and many surgical interventions later - including a botched operation and complex nerve problems - Amanda was confined to the wheelchair she still uses today. The pain has not subsided. Amanda’s legs need to be swathed in bandages because the mere contact of clothes on her skin is unbearable. ‘Living with pain is like having a walkman on your ears blasting at full volume, 24 hours a day, and still trying to lead a normal life,’ says Amanda. ‘You never get used to pain...’
Amanda’s chronic pain and rare disease haven’t stopped her from living to the fullest. She leads what she calls a normal life - in fact, a life that many would call extraordinary. She went on studying, travels the world, and even came sixth in the World Table Tennis Championships for the handicapped in Taiwan in 2002! Amanda’s advocacy work is just as exemplary. She first got involved as a volunteer in an umbrella organisation called Bizchut, the Israeli Center for Human Rights of Persons with Disabilities, of which she is still a Board Member. As a result, Amanda is often seen in the Knesset (Israeli Parliament). One of the highlights of her advocacy work was the passing of the Mainstreaming Education Law, which entitles 160,000 Israeli children with special needs (including Down syndrome, autism, physical and learning disabilities - some of them children with rare diseases) to study in regular schools. Today, Amanda is extremely busy in her position as President of the European Pain Network (EPN), a federation of twelve European national pain organisations created in October 2004 to be the voice of people living with pain in Europe. ‘People in Europe suffering from chronic pain are no longer alone. EPN wants to be a unified and powerful body aiming to make a difference for all Europeans in pain,’ says Amanda. The organisation supported a white paper on opioids and pain at the end of 2005 to draw the attention of regulatory authorities to the situation of chronic pain sufferers. The paper was endorsed by Françoise Grossetête, of the European Parliament. EPN explains that lack of knowledge and understanding amongst medical practitioners is one of the main obstacles preventing pain patients from having their pain adequately managed. Rings a bell?
As always, Amanda’s been working hard since. She’s created Life Beats Pain (the Israeli Society for Fighting Pain) and pushed for the creation of a French chronic pain organisation, as well as a coalition of patient groups with the joint goal of fighting pain. EPN is currently looking for people wanting to be active in this new French chronic pain association, which is a member of EPN. If you are interested, please contact Amanda. She’ll be delighted to hear from you.
Europeans suffering from chronic pain share many problems with rare disease patients: lack of knowledge amongst medical practitioners, authorities and policy makers; inadequate treatment; social and cultural stigma; and impact on family relationships. As with rare diseases, there is a huge variety of government policies across the European Union on treatment availability, pricing and reimbursement, and prescription process. Some treatments, proven safe and effective in one country, are not available in others, or not reimbursed at all. 
Some patients are unlucky enough to combine both afflictions: chronic pain added to a rare disease. Such is the case of Amanda Leighton-Bellichach, living with 
EPN wants to be a unified and powerful body aiming to make a difference for all Europeans in pain,’ says Amanda. The organisation supported a 
As always, Amanda’s been working hard since. She’s created Life Beats Pain (the Israeli Society for Fighting Pain) and pushed for the creation of a French chronic pain organisation, as well as a coalition of patient groups with the joint goal of fighting pain. EPN is currently looking for people wanting to be active in this new French chronic pain association, which is a member of EPN. If you are interested, please contact