Interview with two participants of 8th SSM
8th summer school of myology
Here is an interview with two participants at the 8th summer school, 15 to 24
June 2005 – Dr Zhao and Dr
Castañeda.
Could you describe briefly your professional
background?
Dr Chong-Bo Zhao : I’m a neurologist at the
Huashan Hospital in Shanghai. I’m particularly interested in auto-immune
myasthenia and myasthenic syndromes in general. I belong to a group of
physicians which studies this pathology and we’re trying to discover new
proteins and genes associated with it. Our experience in other neuromuscular
diseases such as muscular dystrophies, myotonic dystrophies, channelopathies etc
has been very limited. In fact, in our country the government and physicians
focus more on common pathologies and are not so interested in relatively rare
diseases. However, our hospital hopes to involve itself a little more in this
field, and that’s why my department agreed to cover my expenses for this summer
school of myology in France.
Dr Carlos Castañeda : I studied neurology in Lima (Peru) and
have been practising as a neurologist since 1994. I obtained a Master’s in
Public Health and have taught clinical neurology at the Cayetano Heredia
University in Peru for about ten years. Then I joined a neurophysiology
department to study electroencephalography. In 1998 I received the World
Federation of Neurology Prize, which led to my first professional training
session in the United States, organised by the American Society of
Electrodiagnostic Medicine. At present, I help two Peruvian associations which
deal with SLA and multiple sclerosis respectively. In fact, the summer school of
myology is my second international training session, and my aim is to work hard
to become a neurologist specialising in the field of neuromuscular diseases.
What are your expectations from this training
session?
Dr Chong-Bo Zhao : This summer school will mean that I can
update my knowledge and get a better understanding of neuromuscular diseases and
acquire a more fundamental level of information. I’ll be able to see practical
cases, discuss them with specialists and bring myself up to date on genetic
testing, which is very important for the diagnosis of neuromuscular diseases.
From this point of view, we’re far from operational in our hospital. We have
only a rather basic histopathological diagnosis facility and we have a lot of
problems with immunomarking techniques. Our neuropathology department focuses
much more on the 8000 cerebral and other nerve tissue samples than on the 100 or
so muscle tissue samples! I hope to set up relations with the AFM and if
possible stay in France for some time in order to learn diagnostic techniques
and understand neuromuscular pathologies better.
Dr Carlos Castañeda : First of all, I just thought it
would be a good way to brush up my knowledge. But after the first few days here,
I must say I’m very impressed. Here we’re meeting professionals who work
specifically on neuromuscular diseases and who are happy to share their
knowledge. I’ve realised that they don’t just content themselves with doing
descriptive work, but that they’re true researchers who make interesting
discoveries in histochemistry, genetics, physiology etc.
What is the present situation in your country for
associations working in the field of neuromuscular diseases and persons affected
by them?
Dr Chong-Bo Zhao : There is one association, called MDA
China. Its president, Madame Zhu came to France recently and met Madame Salama
(Voluntary Representative for International Affairs) and Professor Urtizberea
(Director of the summer school of myology). This association is only just
beginning. Its financial resources are very limited and there’s a vast amount of
work to be done. In China it’s extremely difficult to appeal for donations, like
you can with the Téléthon in France.
In our hospital there’s only one type of diagnosis for progressive muscular dystrophies. The patients are told that it’s not necessary to meet other specialists as their pathology is incurable. They are advised to hold on to their money and to go home and take good care of their child. In certain specialised hospitals respiratory physiotherapy, for example is offered. But these personalised treatments are very expensive and most people cannot afford them. Another problem in China concerns those who live in rural areas and are not covered by our social security system in the same way as town-dwellers. They have to pay their medical expenses themselves. The system is unfair. At the present time there are four or five provinces in the east of China which offer a local social security system for their own patients, and every year they set aside a certain sum for medical expenses. I’m very impressed by what I’ve seen in France and I realise that we in China have a long way to go. However, I remain confident.
In our hospital there’s only one type of diagnosis for progressive muscular dystrophies. The patients are told that it’s not necessary to meet other specialists as their pathology is incurable. They are advised to hold on to their money and to go home and take good care of their child. In certain specialised hospitals respiratory physiotherapy, for example is offered. But these personalised treatments are very expensive and most people cannot afford them. Another problem in China concerns those who live in rural areas and are not covered by our social security system in the same way as town-dwellers. They have to pay their medical expenses themselves. The system is unfair. At the present time there are four or five provinces in the east of China which offer a local social security system for their own patients, and every year they set aside a certain sum for medical expenses. I’m very impressed by what I’ve seen in France and I realise that we in China have a long way to go. However, I remain confident.
Dr Carlos Castañeda : As you probably know, more than half
of the Peruvian population is poor. Therefore, most of our patients don’t have
the financial means to attend a consultation nor to follow a treatment. Also,
the lack of resources in both our public and private institutions is problematic
for researchers and renders it difficult to make precise diagnoses and offer
appropriate patient management.
We have many myopathies and neuropathies which haven’t yet been specifically explored, like in Europe. There are good clinicians in Peru but a lack of muscle anatomopathologists. We are only just beginning to develop DNA techniques and genetic knowledge. Moreover, the few people who do have the necessary knowledge do not work together and only rarely share their knowledge and discoveries. Formal pluridisciplinary teams simply do not exist in Peru and I believe this hinders the development of knowledge about neuromuscular diseases in our country.
We have many myopathies and neuropathies which haven’t yet been specifically explored, like in Europe. There are good clinicians in Peru but a lack of muscle anatomopathologists. We are only just beginning to develop DNA techniques and genetic knowledge. Moreover, the few people who do have the necessary knowledge do not work together and only rarely share their knowledge and discoveries. Formal pluridisciplinary teams simply do not exist in Peru and I believe this hinders the development of knowledge about neuromuscular diseases in our country.
