FW: (LML) Persons who experienced HD speak out

 

 

Leprosy Mailing List – January 30,  2020

Ref.:   (LML)  Persons who experienced HD speak out

From:  Joel Almeida, London and Mumbai

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Dear Pieter and colleagues,

 

Several organizations of people who have experienced HD, several NGOs and the UN Special Rapporteur on the Rights of Persons affected by Hansen's Disease each have arranged for testimonies from persons who have experienced HD. Many of us will have seen or read these powerful statements online, in the run-up to World HD Day. 

 

Sometimes expertise and the experience of HD are united in one individual. The great Linda Lehman, so beloved in Brazil and elsewhere because of her exemplary decades-long contributions, is one of those professionals who have experienced HD and shared their views through the UN Special Rapporteur, Prof. Alice Cruz.

 

This quote from Ms. Lehman's testimony seems particularly telling:

 

"The promotion and use of multiple monofilaments, lighter monofilaments, can detect the nerve damage earlier so that the treatment with corticosteroids can be started earlier. And hopefully the nerve damage can be reversed and disability prevented. People with Hansen's Disease, my wish for you is that you insist that health workers monitor your nerve function of your eyes, hands and feet."

 

This is expert and important advice. Such a combination of knowledge together with experience of the disease is potent. Once persons who have experienced HD gain detailed knowledge, their specific demands for competent case management will be difficult to ignore. Meanwhile, we can keep trying our best to ensure competent case management because we are compassionate and take pride in high quality care.

 

The Brazilian programme has systematised use of graded monofilaments for testing nerve function. The Indian programme in Dadra Nagar Haveli has skilled paramedical workers on motorcycles making home visits to widely scattered patients. Regular, competent, monitoring of nerve function as advocated by Ms. Lehman is demonstrably feasible.

 

Another important point for every HD patient to ask their health professional is:

Do I have LL disease? If so, can you please give me prolonged treatment so that I can be protected against the bacilli?

 

It is common for patients in affluent countries to demand competent case management. This healthy and life-changing practice can be taken up by HD patients everywhere. Their nerves, limbs, eyes, minds, relationships, educations and livelihoods are at stake. They cannot afford to be shy in demanding competent case management. 

 

As discussed here previously, competent case management for LL patients, including prolonged anti-microbial protection, is also the tried and tested route to interrupting transmission rapidly. A 20%/year reduction in incidence rate leading to near-zero transmission has been achieved before, as discussed here previously. It can be achieved again, with 90% reduction in incidence rate within 10 years. The more competent our case management, the more quickly will we end the spread of HD and its sequelae.

 

Wouldn't it be good to succeed? We really can reach a HD-free world using the ingredients of knowledge and love, in the words of the people's organisations on HD. Let's do it.

 

Joel Almeida

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LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

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