Rosita Romor is the Founder and President of the ANFISC non-profit Italian association, dealing with Fibromyalgia, Myalgic encephalomyelitis and Multiple Chemical Sensitivity.
She also took part to the 22nd SIMSI Congress in October 2016. We would like to tell you about her story, the work she does and carries forward each day and the prospects waiting for her and her association.
Last spring at the Hyperbaric Centre of Ravenna we created a high-level multidisciplinary approach to help patients suffering from fibromyalgia improve their situation. We are working together closely with Rosy and with other territory associations to safeguard the victims from this debilitating disease.
Dear Rosy, can you introduce us your Association and your work path?
I started dealing with fibromyalgia in 2003 and in 2007 I founded the Association, of which I am still the President, to raise awareness regarding fibromyalgia chronic pain and many related disorders, but also about Benign Myalgic encephalomyelitis and Multiple Chemical Sensitivity, because the three diseases, although different from each other, can often be present in the same person.
The Association has its registered office in the Province of Belluno and is formed by patients from all over Italy and provincial and regional representatives from many regions operating on the territory to provide correct information on the pathologies and the activities we carry out.
For the scientific part, a group of multispecialist and multicentric doctors has been formed to understand and handle all the patients’ needs and study their pathologies in the best possible way.
Our Association was founded with the aim to:
- make a correct information/training on the pathologies;
- carry out all the established goals, by creating a Centre of Reference with all the necessary specialist medical figures to make correct diagnosis, study and research and to offer patients the possible therapies and necessary treatments for a better life quality;
- activate and develop the scientific projects of research to find the main cause of these diseases;
- reach, through the Ministry of Health, the official recognition of the pathologies and their addition in the Essential Levels of Assistance (LEA); establish the disability decree and attract the interest of the selected Institutions to establish a healthy collaboration, thus creating a set of coordinated ANFISC outpatients’ clinics.
Which goals did you reach in these 13 years of work of the Association?
In 2009, thanks to Professor Silvano Adami, we opened the first university ANFISC outpatients’ clinic in the rheumatology department of the Borgo Trento Hospital to study these pathologies, control the patients, make correct diagnosis and search for the most appropriate treatments. In 2013, the outpatients’ clinic ended its study path highlighting symptoms, alterations and possible treatments available nowadays.
In 2013, thanks to the availability of Professor Enrico Polati, the first ANFISC outpatients’ clinic was created in the Therapy and Pain Department of the Borgo Roma University, to make a correct diagnosis on fibromyalgia and to continue the studies and research to find the most appropriate treatments in order to alleviate the pain of those who suffer.
As regards the path of dialogue with the various institutions of the national territory and the creation of contacts and collaboration with the Health political institutions, in 2009 there was the first roundtable on fibromyalgia and benign myalgic encephalomyelitis with the Vice-minister and then Minister Ferruccio Fazio.
Fazio agreed with the Official Recognition of the Pathologies, but his mandate was too short and we didn’t manage to complete the works.
In 2012 we started again the path with the Minister Renato Balduzzi, but even his mandate was too short.
To my great satisfaction, today the works for the official recognition of fibromyalgia are continuing with the Health Minister Beatrice Lorenzin.
In the Veneto region we managed to have Multiple Chemical Sensitivity recognized in 2013 and in 2015 both Fibromyalgia and Benign Myalgic encephalomyelitis as well. All of them were recognized by Legislative Decree.
The ANFISC non-profit association is followed by more than 5000 people and we are present in almost all Italian regions with representatives, registered members and doctors who collaborate with us.
We constantly keep everybody updated through our website www.anfisc.it and our Facebook page. You can also contact us at the following email address: firstname.lastname@example.org
Speaking about pain is not easy: pain can’t be seen, measured or listened. Pain can just be lived or believed.
My interest for pain derives from a very serious car accident I had when I was 17. It led me to know every kind of pain: I survived by a miracle, but I paid dearly for it.
Speaking about fibromyalgia, its pain and all the inconveniences involved with a doctor can be really embarrassing and difficult. One hour of session is not enough and you don’t just need a doctor who visits you to find the most suitable therapies, but also someone with a fine ability to listen, learn and believe.
This is necessary not only to find a correct diagnosis, but also to make a person feel considered and not an imaginary sick man left alone.
Living with fibromyalgia means living with loads of inconveniences that impede the daily life. It means to get out of bed more tired than the night early, to sleep bad and wake up more than once at night, to feel pain also when resting, to wake up rigid and to wait at least one hour before reactivating all your functions. It also means to tackle a day with a heavy body as if you constantly had a weight of 50 kilos on the shoulders, to have a pain that kills your muscles, to feel high temperature, to suffer from neuropathies, joints pain, headache, dizziness, lack of balance, pains, visceral colics and much more.
Living with fibromyalgia means dealing every day with your body and listen to its limitation messages. You don’t live your body anymore as you want, but it’s your disease that controls your it and keeps you imprisoned, controls how you live and move, what you eat, how much you sleep and you can concentrate. Both in study and work it keeps you away from your social life.
Fibromyalgia is defined by patients as “A Beast” that controls your body. It’s not easy to live with it and sometimes it’s even impossible; as a consequence depression is inevitable. Maybe it’s because of this that the BEAST wants to appear and with the weakest people it plays at home.
Fibromyalgia is a painful reality that doesn’t let you live; it changes your life radically and like a cancer it exhausts you without letting you die.
More practically, the patient’s needs and for all of us taking care of them are:
- Find doctors and specialists correctly prepared on these pathologies.
- Find a doctor who listens to you: the patient must be believed and not be considered an imaginary sick man and left alone.
- Have a correct diagnosis without having to wait for months or years.
- Be correctly informed on the pathology.
- Have all the best, most adequate and customized treatments (medication is not the same for everyone).
- Raise awareness in the GP about the existence of this pathology, for many still unknown or fictitious.
- Raise awareness in the various specialists about the various symptoms concerning this pathology, especially neurologists, so that they can deal with this great dilemma and undertake studies and research to find the main cause and as a consequence the best treatment, or better still, the prevention.
- Evaluate how much debilitating is fibromyalgia in the daily life of the patient by monitoring him. This would be useful for our Association as a next step to submit the various petitions to the Ministry of Health, to protect the patients’ interests, recognize the civil invalidity and require norms that protect the sick person on work with tasks adequate to his physical capacities, so that the Italian Social Security Service, the Italian government agency for the insurance against work-related injuries and the Legal Medicine, can take charge of it. We would like to remind you that all these people are invisible for the institutions.
- Help our Association involve all the institutions designated by State and Regions, so that they can take charge of the patients and their problems, but also to make people aware of this pathology.
- People affected by fibromyalgia live a real ordeal; they desperately ask to be helped to stop this pain.
Being sick is not a privilege, but it’s a condition that ties you down.