Alpha1Doc

Mastocytosis and Fibromyalgia link through Dr Blanco's research

2011-04-21T03:41:00.000-07:00

Dear Alpha 1 Community,

I am a Systemic Mastocytosis patient and I have also heard about the Spanish Regional Health Authority for Asturias’s outrageous and tragic decision imposing a mandatory retirement of Dr. Ignacio Blanco and his colleagues. This is a tragedy for patients and medical research as a whole! These government officials have no idea of the impact upon various areas of international medical research which this imposes. Their decision does not only impact upon your own area of disease as patients, but has a much larger impact both directly on the areas of Fibromyalgia patients as well as Systemic Mastocytosis patients, but it indirectly impacts upon other areas of international medical research!!

Dr. Ignacio Blanco’s recent finding of the involvement of morphologically changed mast cells in Fibromyalgia is a landmark discovery! It is the very first pathological proof of disease for a disorder which doctors have been insisting is nothing more than an “emocionally base! These patients have been wrongly labeled and treated as having emotional problems or merely stress related problems for over 20 or so years!! They have been wrongly medicated due to the lack of pathological proof of something wrong with them!! This discover has vindicated these patients from continued medical negligence and given them now much needed hope for EFFECTIVE treatment!!

This landmark discovery also impacts upon research into Mast Cell Disorders, especially that of Systemic Mastocytosis for until this revelation, it was thought that morphologically changed mast cells belonged only to that of Systemic Mastocytosis, a very rare disease. Yet, many Masto patients also suffer from Fibromyalgia and yet not every Fibromyalgia patient has Mastocytosis! This discovery links the two diseases and also raises many questions for researchers of both diseases!!!

Mast Cell Disorders/Mastocytosis is a very rare disease where the patients become exceedingly allergic due to the malfunction of the Mast Cell. This disease has a dark side in that in some patients it can be cancerous and patients can die within 2 years of diagnosis. Yet the mast cell is essential to life for it is a key immune cell but with Masto patients something has gone wrong with it and our researchers are still struggling to find out what. It is a very complex cell and our researchers have found that the more they learn and discover, the harder their job has gotten. For the past 30 years they have been working on diagnostic processes and they have revealed a great deal about the disease but their research never seems to leave the diagnostic processes into the study of how it effects our bodies for the more they research, the more novel forms of the disease are uncovered. This keeps their work still concentrated in the diagnostic processes for there is still so much they don’t understand. Our researchers therefore depend upon the work of other researchers like Dr. Blanco to help their understanding of how our bodies are being affected by the disease. We patients need the work of scientists like Dr. Blanco for their work assists our researcher understand how our bodies are being damaged by the mast cell. These other researchers directly impact our lives for it doesn’t take much for our researchers to translate the work of these other researchers into how mastocytosis affects us.

As though it is not bad enough that three diseases are directly impacted by the removal of this small group of researchers, it goes even further. The work of other researchers take the understanding they gain from other colleagues and build upon it. The research that is going on as to the mast cell’s involvement in diabetes, aortic aneurysms, demylation of nerves, and many other diseases is impacted due to the fact that what one mere scientist in Spain may find can open up the understanding within another disease in Japan, or perhaps the techniques that Spanish doctor used to make his discoveries can be used by researchers in Sweden to gain more techniques for studying other cells and other pathologies!! The consequences are INTERNATIONAL and WIDESPREAD!! Millions of patients around the work for years to come can be directly impacted upon this one seemingly simple decision by the Asturian government to save money!!
It seems obvious that those who voted for this decision did not have their own jobs threatened with this edict! Yet, what would these lawmakers say were it their children’s lives to be directly impacted due to this edict?!

The inducing a mandatory retirement of government workers is understandable in our present economic times, however, there should be exceptions made for those who are in the medical areas of our societies!! Any country which allows for such a mandate as this should be protested. Doctors are not easily trained or formed and the longer a doctor/scientist is in practice of medicine, the better his skills become for it takes much time to mature their thoughts and understanding of medical science. A scientist begins to enter his/her maturity only after 50 years of age and since many of these professionals must study much longer than the majority of government workers and they enter into the work-force later than the average person – many of them only in their mid-20s, on average about 5-7 years after most workers have entered the work force. These professionals are only hitting their prime when they are in their 50s and 60s!! To remove them from their posts when they reach 65 in truth is like removing another worker at 55 years of age! These doctors and scientists should be allowed an option of early retirement, not be forced into it. There is already such a lack of doctors that we don’t need to reduce their numbers with mandatory retirement laws! It should be an option for these professionals and not mandatory.

Yet, the impact of Asturias decision doesn’t affect only the region of Asturia or only that of Spain, for what the Asturian government has done is to set a precedent. The vast majority of scientists around the world are from the public sector or depend upon public funding for their research! Asturia has set a frightening precedent which threatens ALL of Spain’s medical researchers!! And if Spain allows this, what is to stop Ireland and Portugal and how many other countries from doing the same? This also goes over to Canada as well as the United States for again, the majority of medical research is government funded! It is frightening the international impact this can have upon medical research! Asturia’s decision could very possibly have a domino effect over to other countries!!

But you say, what about younger doctors? What doctor/scientist is going to want to invest hard time and energy in studying and researching an area of medicine if he can’t be assured of finishing his/her work?!! The incentives to push for answers is torn away from them and they will become disinterested in this work for fear of not being able to finish it! These younger doctors also depend upon their elders to help them gain more insight! Without those elder colleagues, they lose a great deal of assistance and understanding which is essential to their work!! All of medical science will end up suffering as a result! Many of the great strides in medicine will now be hobbled and we will not see the future progress which is badly needed for diseases like AAT Dificiency or with Mastocytosis! The concentrated efforts will go where the money goes which is with larger diseases and rare disorders like ours will go without attention and thus improvement for their patients!! Lives will be lost!! We patients must NOT allow this to go unchallenged!! We must stand up and be counted, protesting the removal of our medical researchers. You can not exchange the temporary amount of money saved for in the end, due to the lack of investment in medical research, cures which could bring healing to patients won’t be found and these people will end up relying upon the government for help which is , in the long term, much more expensive to have to bear!

It is time for US PATIENTS to stand up and DO SOMETHING to help our scientists!! We patients are not feared for we are not unified, but if we don’t do something now while the situation still affects few diseases, we may find it impossible or too late to change the situation around!! We need to write to our governments on behalf of the decision of the Asturian government, protesting this edict and demanding that they grant an exeption for medical professionals thus allowing these men and women the choice of whether or not to retire!!! This must be the choice of these doctors and scientists and not a mandatory edict!

Lisa Morrison Thuler
Patient Systemic Mastocytosis

Efficacy of alpha1-antitrypsin augmentation therapy in conditions other than pulmonary emphysema

2011-04-13T01:30:00.001-07:00

R&D Fibromyalgia and alpha-1-antitripsina

2010-01-28T02:31:00.000-08:00

Click on the link to read more.

Letter of support: Dr Frederick J de Serres

2010-01-28T01:42:00.000-08:00

Please click on link to read Dr de Serres letter of support for Dr Ignacio Blanco

Alfa1 Czech Republik

2010-01-26T01:34:00.000-08:00

Dear Spanish Alpha 1 Community
I have heard about the intention of the Spanish regional health authority to impose compulsory retirement on Dr Ignacio Blanco despite his present active curriculum in healthcare and ongoing research projects in the field of Alpha 1 –antitrypsin deficiency. As a patient, I’m concerned and would like to comment on this. We all know and have experienced the difficulties in finding an experienced physician in this very specialized field. Most of the patients get their correct diagnosis and appropriate treatment after a long odyssey of consultations and suffering. A trustful relationship to a physician/specialist is of key importance to any patient. Moreover, Dr. Blanco contributes as a researcher in an important way to the progress in knowledge about this rare disease – the progress that we all so desperately need. Therefore, I would like to express my support to the Spanish Alpha1 community in their efforts to support Dr. Blanco continuing as a professional in the Public and if possible private sector.

Silke Horakova
Patient Alpha 1-deficiency and Chairperson of Alfa1 Ceska republika

Letter of support for Dr Blanco

2010-01-18T05:40:00.000-08:00

Pavia 16th January 2010
To whom it may concern

I have received the information that dr Ignacio Blanco has been imposed a compulsory retirement form his local health authority.
I have personal acquaintance of Dr Blanco since a very long time and I always appreciated his deep commitment in the research and management of alpha1-antitrypsin deficiency in Spain.
I would like to express my concern about this decision and my support to Dr Blanco. I guess that by this way not only the Spanish alpha community but also the whole European one will be deprived of one of enthusiastic protagonists. We all know in fact the dedication of Dr Blanco to the problem of the epidemiology and care of alpha1-antitrypsin deficiency. Thanks to the work of Dr Blanco and other Spanish scientists and physicians, we obtained a significant advance in the knowledge of the natural history of this rare condition.
I really hope that it will be possible to allow dr Blanco to keep his outstanding work in the field of alpha1-antitrypsin deficiency.
Sincerely

On the behalf of the Italian Registry for Alpha1-antitrypsin Deficiency

Maurizio Luisetti MD
Center for Diagnosis of Inherited Alpha1-antitrypsin Deficiency
Laboratory of Biochemistry and Genetics
Institute for Respiratory Disease
University of Pavia
Fondazione IRCCS Policlinico San Matteo
Piazza Golgi 19
27100 Pavia
phone office + 39 0382 423131 / 0382 501015
phone lab + 39 0382 501004/ 0382 510003
fax +39 0382 502269 / 0382 422267
email m.luisetti@smatteo.pv.it

Alpha-1-antitrypsin deficiency expert forced to retire

2010-01-13T06:44:00.000-08:00

Dear colleagues:

I am contacting you all regarding an issue which has arisen in Spain, regarding Dr Ignacio Blanco Blanco, one of our leading pulmonary specialists in Spain and most active researcher into Alpha-1-antitrypsin.Dr Blanco is currently joint coordinator for the Spanish Alfa-1 Registry and had proposed his hospital as a Reference Centre for Alfa-1

The regional health authority of Asturias (SESPA)have imposed compulsory retirement,on him inspite of his present active curriculum in healthcare and ongoing research projects.

At the moment we are very concerned about losing Dr Blanco as a very
active practitioner and researcher for Alfa-1, not just in Spain but on
an international basis.

We are currently working on a campaign to support him continuing as a
professional in the Public and if possible private sector.

We would greatly appreciate letters or comments of support for this from the international alpha -1 community from colleagues, fellow researchers in this field and patients. If these are sent direct to our Association, we will pass them on to the relevant institutions. We ask you to post your words of support.

We feel that it is an unacceptable situation for highly qualified and
specialised physicians and researchers to be parted from their work,
whilst they continue to demonstrate a very high level of activity,
dedication and expertise and of course are in good health. This is a
decision that we cannot agree with under any circumstances.

The future of Alpha-1 healthcare and medicine depends on the retention
of people with such skills and expertise and the passing on of this
knowledge to future generations of healthcare providers. In the case of
Dr Blanco, there are sadly no junior doctors who are in place to resume
his work in his region, and in Spain there are few researchers in this field, this is a blow to the Alpha-1 Community.

We welcome your support

Many thanks

Asociación Alfa-1 de España
34 956 537186
info@alfa1.org.es

COPD and Emphysema symptoms improve with Bone Marrow Implant

2009-06-24T10:00:00.000-07:00

It will be interesting to read your comments on this recently published study.

Gene Therapy cures ten children, Hospital San Raffaele, Milan

2009-01-30T03:00:00.000-08:00

Link to Hosptial Research Centre : current research
http://www.sanraffaele.org/58381.html?page=4

Abstract published in New England Journal of medicine:http://content.nejm.org/cgi/content/abstract/360/5/447

Can anyone comment on the possibilities for this type of therapy for AAT deficit.

Drug shields mice from Chronic Lung Disease Study

2009-01-20T05:56:00.000-08:00

http://www.reuters.com/article/healthNews/idUSTRE4BM4SA20081223?feedType=RSS&feedName=healthNews

What opinion do our readers have about this study and the possiblities of protecting the lungs from COPD caused by AAT deficit?