- Konrad Tiburzy's story -
CIDP since 1999 - interested in research into GBS

Since I began displaying symptoms of CDIP in April 1999, I've been receiving IVIg almost every month, at an average rate of 120g per treatment. Plasmapheresis 10 sessions, twice a week, after overcoming a tetraplegia. Some worked for about one month only, seemingly less than the effect of immuneglobulin.

Since September 2000, I have also been taking azathioprin 225mg (Imurek + 20-05mg corticoids). Unfortunately my GBS-situation hasn't changed since May 2001. I receive monthly infusions of 16 bottles immunglobulins, i.e. 4 days x 4 bottles à 10 grams in 200ml solution. Besides, 225mg azathioprin and 5mg of cortison per day.
(1 bottle costs 1.500 DM at the hospital and about 2.000 DM on the free market!).

I have recently begun trying to teach part-time while receiving regular treatment at the Allgemeines Krankenhaus Harburg (General Hospital of Harburg) hospital. My physician there is the Honorable Prof. Dr. Eberhardt Schneider, neurologist, specialized in Morbus-Parkinson.

In addition to working, I am also trying to get acquainted with the facts of this disease: Is there hope of overcoming the disease?
Learning about this is difficult, as I do not have any training or theoretical introduction to medicine/therapeutics in general or more specifically, to GBS.

My problem is two-fold: on one hand, exchange of information with physicians is difficult, due to my being a layperson. On the other hand, there is my lack of knowledge of recent developments in science and research on GBS.

I have been trying to find out about research on GBS without much success. The publications of the main GBS association of Germany help, but don't offer a thorough and precise overview. Besides, patients and medical knowledge seem to be rather atomized in Germany (lack of global strategies). Access to the GBS-scenarios in France, Great Britain, the US and other countries is difficult.
I am presently trying to find out more about steroids and GBS. I have found a study by E.E. Baulieu, France: "The use of Progesterone on rats for the regeneration of myelin sheaths". Is there anybody who can suggest ways to find out more about this?

I have put together the following questions that I feel concern all patients of GBS:

  • What is the actual medical/pharmaceutical research situation regarding the practical therapeutical use of progesteron in human GBS patients, and what are the chances of it speeding up recovery?
  • Does demyelinisation, such as in GBS, occur in other diseases?
  • Do researchers studying these diseases pool their resources and share results?
  • Who is who for these questions? (neurologists, immunologists, virologists, interdisciplinary teams, institutes, projects, etc.?)
  • Are any global strategies against the atomisation of GBS patients regarding i.e. randomized studies, therapy centers and so on? (blue prints of supranational health organisations, European Union, international NGO foundations, experts in the fields of science...?)

The idea behind these questions is based on the presumption that:

  • There are few GBS-patients, more or less scattered all over the world.
  • Existing laywomen/men -organisations haven't much lobbying power.
  • Science might not be sufficiently interested in the growing importance of aging, interrelated diseases, in cooperation with basic research, etc.
  • The pharmaceutical industry isn't keen on GBS-research, which is considered a non-profit undertaking. It should be persuaded to change its attitude (lobbying, public support and funding... ).

Meanwhile, my pain seem to slowly destroy my personality and my drive to be of further use to society and to have creative ambitions. There's a big black hole in front of me.

Staying at the hospital and teaching in spite of illness prevents normal life and normal functions, such as answering mail and other business promptly.

As my personal situation (GBS patient undergoing treatment) does not permit me to undertake a deeper questioning of GBS, I appreciate your offer of a forum in which to ask these questions of those it may concern, and thus advance the unity of GBS patients a little, many of whom are desperate and feel very isolated and helpless vis-à-vis the medical world.

Best regards,
Konrad Tiburzy
11.2001

 

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