A swelling localized below the pores and skin, which most frequently impacts areas of the face reminiscent of lips, tongue or eyelids however which might additionally have an effect on different areas reminiscent of arms, toes or genitals. It is angioedema, typically mistaken for a powerful allergic response, particularly when it happens related to urticaria, with redness and intense itching. For this cause, a affected person in Italy can typically wait as much as 10 years to acquire an accurate prognosis, as consultants recalled on the event of the third version of Angioedema Day, scheduled for May 18th by ITACA (Italian Network for Hereditary and Acquired Angioedema), in collaboration with the Association for Hereditary Angioedema (AAEE). An consciousness occasion organized to coincide with the world day devoted to the pathology, promoted by the world group of sufferers with angioedema (HAEi).
Hereditary angioedema, in the direction of a brand new remedy 21 December 2023
Onset in childhood
Although it isn’t an allergy within the strict sense, it might probably nonetheless be triggered by components reminiscent of taking medicines, particular meals, contact with substances reminiscent of latex or insect bites. However, it’s a actual illness, uncommon and really painful, remembers the president of ITACA Mauro Cancian, Director of Allergology on the University Hospital of Padua. “A situation that tends to start in childhood or adolescence and whose onset is as a result of deficiency of a plasma protein, the C1 inhibitor, or different genetic defects”.
Rare Disease Day, a legislation is required to guard households by Mara Magistroni 28 February 2024
A illness to not be underestimated
Although it’s thought of a uncommon illness, because it impacts simply over 1000 sufferers in Italy between women and men, it shouldn’t nonetheless be underestimated, Cancian remembers, on condition that it might probably trigger very painful belly colic and contain the airways: when the swelling impacts the taste bud, actually, could cause respiratory difficulties which should be instantly reported to healthcare professionals. In brief, if not handled adequately, angioedema may even be deadly. And but docs, within the absence of a selected specialization within the area, could have issue recognizing the signs of this illness.
Women, nearly 4 days of labor a month misplaced because of uncommon ailments by Dario Rubino 22 April 2024
The Patient Card
Greater consciousness is subsequently wanted. Thus, to cut back instances and rapidly entry acceptable therapies, the ITACA community which brings collectively the 25 Italian facilities specialised within the administration of the illness, has chosen to open the doorways of the reference services to sufferers and caregivers on the event of the attention day. On this event, the “Patient Card” shall be distributed, a doc with the affected person’s title and a QR code by means of which any physician – whether or not from the emergency room, on-call or common drugs – will have the ability to entry important info on acute therapy formulated by the scientific board of ITACA. The doc is in 5 languages (Italian, German, Spanish, French and English) to permit sufferers to simply use it even overseas.
For the primary time three youngsters with autoimmune ailments handled with Car T remedy by Dario Rubino 17 January 2024
Help for docs
The goal of the Card, along with the knowledge disseminated on the Facebook, Instagram and LinkedIn websites opened by ITACA in latest days, is to supply all docs concrete assist in the occasion that they’ve to help a affected person with angioedema. “These initiatives – concludes Pietro Mantovano, President of AAEE – are a part of the continual efforts of the ITACA community and our Association to unfold better information of the pathology, to cut back diagnostic delays and permit satisfactory entry to therapies for all sufferers who’ve them. want”.