Roma – Cushing disease: the first web-community was born
Promote information, to support patients and their family members, encourage the sharing of experiences: these are the objectives of the first Italian web-comminity of patients with cushing disease, a rare disease linked to a defect in the hypophysis, which affects almost always women with a heavy impact on the quality of life. The web-community, created by A.N.THE.P.THE. Italy, Italian National Association Italian Pathologies, thanks to a support from Novartis, and hosted on the association’s website to the address www.Anipi-Italy.organ, It was presented on the occasion of the National Conference of A.N.THE.P.THE. which was held on 13 September in Verona.
“ every day the patient associations confront each other with a growing request for information from their subscribers. The nature of the request varies from personal needs to more general news, – he claims Fabiola Pontello, President a.No.THE.P.THE. Italy – “pfor Cushing’s disease A.No.THE.P.THE. has decided to respond to this need by activating a national web-community where patients can find all the information regarding the disease from a diagnostic, therapeutic and relational point of view and have the opportunity to get to know each other and talk, overcoming the sense of loneliness associated with this rare disease.”
Cushing’s disease is caused by the presence of a pituitary adenoma, a benign tumor of the pituitary gland, which causes the excess production of a hormone called ACTH, which stimulates the glands located near the kidneys (the adrenal glands) to produce cortisol. When an too high quantity of ACTH is released, the excess cortisol produced by the hyperstimolate adrenal glands gives rise to a series of signs and symptoms that include alterations and disorders at body and physical level but also of the behavioral, sexual and psychic sphere. The impact on the quality of life of the patient is very heavy: the evidence of physical changes and the loss of autonomy generate frustration, anxiety, refusal of themselves and guilt.
Fulcro of the web-community, together with the information section, the discussion forum within which people with cushing disease or their family members will be able to confront their diagnostic and therapeutic path and have the opportunity to share their experience linked to coexistence with the disease. A section of the community is dedicated to the testimonies of patients, in the form of videos and short stories.
“ the need to create an ad hoc web space for people who are affected by cushing disease derives from the fact that they are generally young patients, who use the web to look for answers and be able to compare themselves with other people who are facing their own path. The choice to focus on the web – he claims Fabiola Pontello – It is also due to the fact that the people affected by cushing disease, for the physical transformations they suffer due to the disease, accentuated in most cases by a late diagnosis, tend to isolate themselves and use the computer as the main tool for the relationship with the world.”
In pituitary diseases, early diagnosis is a key factor to reduce the risk that serious complications develop. However, almost all patients share the experience of a late diagnosis, due to poor information on these rare diseases, often underestimated and not recognized.
The birth of a new source of information on the web dedicated exclusively to a rare pathology and the opportunity for patients to be able to compare themselves with those who are facing their own problems represent a great opportunity to ensure that cushing disease no longer remains unknown.