00:00Hypoparathyroidism is a difficult word that actually affects the quality of life of many patients.
00:07because it is a deficiency of the hormone, parathyroid hormone, which is a hormone produced by the parathyroid glands
00:13which can be damaged by neck surgery, most often by thyroidectomy
00:20but also for other interventions on the neck and therefore causes a calcium deficiency in the blood
00:27and therefore with a series of symptoms that are also quite significant and can reduce the patient's quality of life.
00:36It is particularly important that the patient is followed up regularly
00:41because it is a chronic disease but it is also a dynamic disease and therefore the control of calcium metabolism is essential
00:48It can undergo changes over time and is also related to particular conditions
00:55physiological such as pregnancy, pathological i.e. new diseases or drugs that may be necessary
01:03to treat various diseases and may interfere with the control of hypoparathyroidism.
01:09In particular, controlling calcium metabolism means avoiding the patient the symptoms that could arise
01:16from an imbalance for example paresthesia, muscle cramps, muscle weakness in the case of hypocalcemia
01:23but it also means preventing complications especially at the level of noble organs such as the kidney
01:30and therefore it is important to carefully monitor the patient to ensure the best possible management of his pathology.
01:38Let's say that for many patients the traditional replacement with calcium and activated vitamin D
01:46which must be taken because parathyroid hormone is needed to activate vitamin D
01:53for many patients we say that it is sufficient as long as they carry out, let's say, regular checks
02:00of a series of other parameters. For some patients, however, this therapy does not control this condition.
02:10satisfactorily and therefore the possibility we currently have in these patients
02:18particularly compromised in being able to implement a pathogenetic therapy thus replacing the missing hormone
02:25determines a very promising improvement in the patient's general condition
02:33so it is certainly a promising therapy which however is not necessary
02:38and it's probably not even possible at the moment to say offer it to all patients.
02:45It is a very complex pathology and therefore it is a pathology that involves multiple difficulties for the patient
02:52who lives it every day. Consequently, we need an adjustment regarding the protections
02:57at work, social and welfare levels for both young children and adults
03:04who suffer from this pathology. As an association, we obviously try to support patients
03:09regarding management and information relating to protections and as far as we can help
03:17directly also to patients in the area and thus create a network of contacts so that
03:22In this case, people feel less alone because it is objectively a disease that leads to social isolation.
03:29A network is built around the patient with chronic hypoparathyroidism which includes:
03:35different health professionals, specialists from various medical disciplines and it is important
03:41intensify the collaborative relationship with the general practitioner as well.
03:47I think this type of collaboration should be intensified and made as systematic as possible.
03:54It is important to talk about it because it is a condition that is often considered unpopular.
04:00because these patients may be patients who have undergone surgery for oncological diseases
04:06for example not only of the thyroid but also of other structures of the neck
04:13and therefore it was considered an overall acceptable condition.
04:18In reality, for many patients it is not an acceptable condition and in any case the consequences that have been
04:25often also necessarily a little neglected instead, these new therapies will certainly be able to
04:35significantly change the quality of life of these patients.
04:41The guide to rights is certainly a very important tool, prepared and developed by Omar
04:49and this definitely helped us provide all the necessary information.
04:55It is a fundamental tool that did not exist until a few years ago and this certainly indicates a step forward.
05:02which will certainly help us to better understand which protections can be improved,
05:07which regulations can obviously be improved, always obviously in the interest of us patients
05:12and the inhabitants of the.
05:13The goal is to raise awareness among institutions, regions, and citizens.
