I'm Emanuela Pozzan, I'm 39 and I live in the province of Vicenza.
I am ill with LGMD2C Limb girdle muscular dystrophy, or LGMDR5.
The first symptoms of my disease appeared around the age of six, when I started walking on tiptoe. After several visits, a neurologist from Vicenza submitted me to electromyography and control of blood ck values.
Later, in Padua, I started my real clinical path. At the age of seven I underwent a muscle biopsy and at the age of eleven I was subjected to stretching of the Achilles tendons to lengthen the walking period. I came to a diagnosis only in 1995, at the age of twenty thanks to the study of DNA.
The disease came on slowly and weakened me year after year. At first I had difficulty climbing the stairs, getting up from the ground and from the chair, then the difficulties arose in lifting the arms. Due to walking problems I often fell with important consequences and this made me opt for the manual wheelchair for long journeys, around the age of fourteen. Over time I walked less and less until I completely stopped at twenty-six.
In the first years I was treated with cortisone and I was given a few cycles of physiotherapy. After the diagnosis, I regularly underwent pulmonological and cardiological examinations. Since July 2006, from the age of thirty-one, I have been mechanically ventilated. From a cardiological point of view, I am treated with beta-blockers to counteract cardiac extrasystoles.
As for the physiotherapy aspect, I have not been followed by my ASL for about twenty years, as the answers obtained in the case of chronic diseases such as dystrophy are negative.
There is no improvement, so resources are directed towards other problems due to a lack of personnel and funds. Those who go to the local public physiotherapy services come to maximum liquidated with ten continuous annual sessions, which is practically useless. I tried going to the pool privately and I benefited greatly, even if the process is very stressful.
Having to leave, perhaps with cold outside temperatures, undressing, entering the water, going out, taking a shower and getting dressed, involves physically and economically a very onerous commitment.
From a social point of view I have had a normal life, I attended school until the maturity and I had friends who allowed me to live experiences like most of mine peers. Attending schools was not easy from a logistical point of view, the building had stairs, and if at the beginning I was taken to the floor by the janitors, towards the end of the studies, the municipality after great battles had equipped the school with a stairlift .
After graduating, I turned to the Sil service of my ASL. At the time, Sil was the job integration service that was in charge of reporting and following the cases of compulsory insertion protected categories. At the time of my registration, a company in the area was looking for a person to be included in its workforce, being obliged to do so. Coincidence did yes that in a short time I met the top management by doing the job interview. At the time, you had to do a minimum compulsory internship of six months in which both me and the company we could withdraw. I had to perform tasks suited to my physical condition for free, receiving a reimbursement of expenses of 200,000 lire per month for transport costs.
I started my journey in April 1995 and I did this test. I was very young, I was twenty and I was shy, I slowly entered the work team. The tasks I was assigned to were simple and alienating. In October of the same year I was regularly hired on a part-time contract for six hours a day, five days a week. The moment I was hired, my real professional experience began. I started by supporting the company warehouse with the loading - unloading of materials at the terminal, then I moved on to accounting having graduated as an accounting analyst. Over the years the company has moved to a larger building and has grown. I went through various offices: production, commercial and administrative. The company has always dealt with my problems by facilitating my movements without the presence of architectural barriers, opting for buildings without barriers in case of commitments outside my office, see: dinners, refresher courses, meetings. I have always had good relations with the staff, friendships have been created here that still exist today and that have kept me active and inserted in the company. The employment relationship ended after fifteen years of service for reasons independent of my state of health. The experience has allowed me to become financially independent