21/Apr/2010

In Search of Solidarity

A group of pilgrims suffering from Familial Spastic Paraplegias have completed in 10 days their Camino de Santiago along the Camino Francés from Pamplona to Santiago. Their objective was to inform people about the problems this rare neuromuscular illness brings along.

The 24 people that participated on this expedition did 10 stages of about 10 KM each, all on special bikes that are driven by the force of their arms and not by using the legs.

The Spanish association of Familial Spastic Paraplegias started this initiative so that the society in general puts more attention and importance to the people that are suffering from this disease that causes stiffness and tiredness in the legs.

By doing this Camino, these pilgrims would like to set the focus on the lack of support and shortcomings in the Spanish health system that the affected people of this illness are suffering from. They would like to convey the necessity of adaptation that the people suffering from this illness need and also claim their right to enjoy their leisure time.

To get an idea of the drama that they suffer, it is enough to say that to be diagnosed with this illness you need five years of test. There is no cure for this illness. The delay in the diagnosis of this illness, causes in 30% of the cases, that they affected person gets worse.

In Spain there are more than 4000 people with this diagnosis. The only known treatment that is known to slow down the degradation of the muscles is physiotherapy. This treatment is paid for by the affected people themselves, and not by the estate.

Now they are hoping that the Camino de Santiago will help them be more visible and that they will receive more sympathy in the society.

On the website of the Spanish association of Familial Spastic Paraplegias you can read the diary that these pilgrims have written on their pilgrimage to Santiago. They have also published an itinerary that you can download here (pdf format).