麻风口述史

《疼痛是一种恩赐》

纪念保罗·布兰特(Paul Brand)医生诞辰100周年

一位老人为了抢回一个掉落的红薯,直接用手伸入到烧的火红的火盆中。当手矫形外科医生保罗·布兰特在新几内亚的一所麻风病院看到这一幕时,他意识到麻风康复者失去了对疼痛的警觉系统。而正是这一发现彻底改变了对麻风病治疗的核心理念,对麻风病的治疗做了革命性的改变。今天,2014717日正是他诞辰100周年的日子。

这一幕深深地烙印在布兰特医生的脑海中,并在他与飞利浦·杨希合著的《疼痛是一种恩赐》中记载下来。他证明了麻风病人出现手指和脚趾的缺失并不是由麻风杆菌造成,而是由于神经损伤所引起的继发性手足温觉和痛觉缺失所导致。这也是导致受影响的手足一直面临着继发性感染或烧伤等危险的原因。

感觉缺失是麻风病造成神经损伤所带来的最重要问题。损伤将影响手、足和眼功能,甚至会影响康复者参与社会活动,损伤甚至会在治疗完成(治愈)后出现。(因为神经损伤是无法恢复的)

但是,哪怕是神经损害已经出现了,还是有很多方法可以做去避免进一步损伤。

国际抗麻风组织联盟的成员长期以来在全球一直致力于帮助那些曾经患过麻风的康复者们,许多成员在帮助他们采用一些适当的方法以减少神经损伤所带来的危险,例如提供保护鞋等。此外也通过建立自我护理小组,通过相互支持和鼓励来获取更多的帮助。

布兰特医生主张神经损伤所造成的残疾是可以预防和很大层度的矫正的,残疾不应该是麻风病的必然结果。目前全球麻风防治战略将目标设定为到2020年止新病人的可见残疾下降到100万分之一一下,将较2015年新病人残疾率降低35%

由国际抗麻风组织联盟专家小组编印的《如何预防麻风残疾》为卫生工作者和护理人员提供了残疾预防和护理建议,而这些建议都是以布兰特医生的治疗理念为基础,从而也避免了许多病人发生进一步的神经损伤,为此我们不能不对布兰特医生满怀感激之情。就像国际抗麻风组织联盟主席雷尼·斯塔赫利(ReneStäheli)所说:

“布兰特医生通过他的研究为我们了解麻风病做出了巨大的贡献,他以一个整体的方式和态度去对待每一位妇女、儿童、麻风康复者,而不只是关注他们的疾病,者正是今天国际抗麻风联盟成员应该采取的方式和所支持的抗麻风活动。”

这位真正的世界公民,布兰特医生在英国出生,在印度长大,最后在美国完成他的学术研究工作,曾于1993-1999年间任国际抗麻风联盟主席,于2003年去世。

The Gift of Pain - 100th Anniversary of Birthof Doctor who Revolutionised Treatment of Leprosy

An oldman is rescuing a yam that has fallen off a stick by thrusting his handstraight into the red hot coals of a charcoal brazier.  Hand surgeon DrPaul Brand, watching this scene at a leprosy hospital in New Guinea realisedthat people affected by the disease have no warning system alerting them topain. That insight transformed the treatment of leprosy and today, 17th July2014 we celebrate the 100th anniversary of his birth.

The image was searedin Paul Brand’s mind and he recorded it in his book The Gift of Pain, co-written with Philip Yancey. He proved that the wasting away of fingers and toesis not due to infection by Mycobacteriumleprae, but is the secondary result of loss of temperature and painsensation in hands and feet caused by nerve damage. That is the reason whyhands and feet thus affected are at constant risk of being injured throughsecondary infections or burns for example.

Loss of sensation is the most important problem forthose with nerve damage as a result of leprosy. Impairments may limitactivities using hands, feet and eyes, as well as restrict socialparticipation. Impairments can develop even after completion of Multidrugtherapy, the standard treatment today.

However, much can be done even when nerve damage isalready present.

ILEP Members have long involvement in supporting orhelping many of the two to three million women, children and men who are thusaffected across the world

Many Members help them to adapt habits which candecrease their risk of contracting further nerve damage, and for instance helpprovide protective footwear.

Members of ILEP are instrumental in setting up self-caregroups and facilitating and encouraging women and men affected to do so wherethey can benefit from sharing their experiences, supporting and encouragingeach other.

Dr Brand advocated that disabilities from nerve functionimpairment could be prevented and corrected to a large extent and were not theinevitable result of leprosy. Current global strategy aims to reduce the rateof new cases with visible disabilities to less than one per million populationby 2020, with a milestone of reducing by 35% the rate of new cases withdisability per million population by the end of 2015.

How toPrevent Disability in Leprosy was produced by members of the ILEPTechnical Commission to help provide advice for all health workers and carerswho have to help those affected by nerve damage.

Dr Paul Brand’s legacy to people affected by leprosycannot be underestimated. For every individual who does not incur further nervedamage he is to be thanked.

This is just one immense reason why we remember and paytribute to Dr Paul Brand today, 17th July 1914, the 100th anniversary of hisbirth. Says President of ILEP Rene Stäheli:

“Dr Paul Brand made a huge contribution to ourunderstanding of leprosy through his research. His approach and attitudetowards women, children and men affected by leprosy was holistic, which is theapproach embraced by ILEP Members in the anti-leprosy activities they supporttoday.”

A true world citizen Dr Brand was born in Britain,brought up in India and worked on his academic research in the USA. He wasPresident of ILEP Member The Leprosy Mission International 1993-1999. He diedin 2003.