Společnost C-M-T

There is no medicine for patients suffering from incurable disease, the only thing to help them is to stay in the spa. Závada - Families whose members suffer from specific hereditary and till this time incurable disease called Charcot - Marie - Tooth (CMT) live in Zavada and its surroundings near Opava.

There are are no medicaments to stop their gradual paralyse of upper and lower limbs. The only thing that the doctors can offer them to put the course of the disease off is an annual long -termed rehabilitative stay in the spa. But this only treatment might be restricted because of the new arrangements of Health ministry. That is why they started to fight for it.

"To keep fit and be able to work again, I need at least 5-6 week stay in the spa. Unfortunatelly, the valid public notice of Health ministry, according to which an indication list for spa attendance is made, says that a patient is allowed to visit the spa once every two years. The doctors considered it in a different way in each districts. In some districts people were sent to the spa every two years, and in other districts every year. "That is why we wanted to remove this discrepancy from the public notice and also promote every year stay in the spa, " explains Josef Zajíc, chairman of CMT association which represents 4 thousands of CMT patients from the whole Czech republic.

The ill people are related

Not long time ago it was not known what this disease causes and why it affects only some members of these families in Závada. The fundamental reversal came in 2002 when these people contacted CMT association that represents the ill patients. Above all, doctors from The Charles´ University and The Faculty of medicine in Motol,who are concerned in this disease evolution, got to know about them. They started to investigate what connects these people. The family tree beginning in the 17th century of two clans with the disease was compiled thanks to enthusiasm of family Klouzal from Závada and thanks to some datas from the record office in Opava.

They found out that all the people with this handicap are related. On the basis of the family tree the doctors examined most members of those families and took the DNA samples from 55 people, twenty of them handicaped and thirty five so far without any symptoms. They contacted a team of doctors in Belgium and compared the data together. They found out that the disease is caused by the disorder of gene HSP22 because of which cells in spinal cord die out.

The Charcot-Marie-Tooth disease causes gradual muscles weakness. The ill people have problems with balance, walking and control of fingers. Falling of the foot causes stumbling that is why the handicap people lift the knees high by walking.

The Medical Chamber suggests a three week spa attendance

According to Mr. Zajíc, The Czech Medical Chamber wants to save money and suggests limiting of the spa attendance to three weeks once every two years. "It is discrimination. If the ministry wants to save they should concentrate on those who attend the spa for fun to enjoy some social life. Why it should influence us who need the spa care?", Mr. Josef Zajíc is angry and says that according to last information he got, minister Rath will not follow this suggestion and the original public notice is still valid.

The ministry did not respond

No reply was received to the e-mail question sent to the Health ministry by editors. Fourty years old Jan Ryška from Závada, who had the first symptoms of the disease in the age of 15, also made sure how useful for him staying in the spa was. " My stay in the spa kept me fit, the course of the disease can be stopped by special training and mineral water affect. The human body is getting used to particular procedures the first three weeks and the healing effect comes after five weeks", Jan Ryška confirms.