(Adnkronos) - “Il Lupus eritematosi sistemico è variabile da persona a persona. 40 - 50 anni fa l’obiettivo era la sopravvivenza, e la gravidanza assolutamente no. Oggi invece grazie ai progressi fatti le donne affette da Lupus sanno di poter affrontare un gravidanza. La nostra aspettativa è sempre di avere nuovi farmaci, il più efficaci possibili, con meno effetti collaterali e che possano essere somministrati su larga scala”
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00:00Less is variable, just like the disease, from person to person.
00:09There are people who have a lighter less, well controlled, and in some way they win less.
00:17But if we think about those who have renal problems, if these become serious, we are talking about dialysis, transplant, etc.
00:27I also want to say that there are many neuro-less, and this affects the quality of life,
00:33as it can cause ischemia, so there is always greater attention to these aspects.
00:41Speaking of a medium-normal less, without particular complications, first of all it affects.
00:49Why? Because young people get sick.
00:52Young women, at an early age, do not have an expression of their life, and this creates a lot of problems.
01:00Visits, drugs, the person is diagnosed with less.
01:07They find themselves in front of being sick from one day to the next, but sick forever, that is, chronic,
01:14they do not heal, however it creates limitations.
01:18Even if I, as an optimistic person, as a person who leads an association, etc.,
01:24I always tend to say that you live, you live well, you can have a good quality of life,
01:29but it is not normal life, it is the new normality.
01:32Just the banal fact, holidays.
01:36The less sick person has to cover himself with hats, creams, he cannot sunbathe,
01:43there are forbidden places, and so this still influences his life, and this is banal.
01:51But fatigue, for example, one of the many symptoms that Opus gives, is a chronic, heavy asthenia,
01:59it goes so far that the person decides to divide his energy and work,
02:06then if there is space, free time.
02:08Then he has to do the bills with drugs, with periodic sales, he has to pay attention to many things,
02:14life is not the same.
02:16However, you can reach a new normality, as I always say,
02:20you can also achieve a good quality of life, but it is not like before.
02:25This is what I mean, when it goes well, when it goes badly, it is definitely worse.
02:30Research has been very important, and I hope it continues,
02:33because it would actually be important to be able to immediately abandon the cortisone,
02:40many things would be important, but it is not that everything can be done, it is hoped.
02:47If we think that 50-60 years ago, the goal was survival,
02:52because there were no drugs that could effectively counteract the disease.
02:59There was only cortisone at the beginning, and high-dose cortisone,
03:04which is still used today.
03:08With the advent of new drugs, there is more and more the possibility of suspending it
03:15and not having all those crazy side effects.
03:20The period of time that a lupus patient uses cortisone even today
03:25is long enough to cause damage, damage to the bones, to the prospective.
03:31Then, 50-60 years ago, there was no pregnancy at all.
03:36Today, women affected by lupus know they can face pregnancy,
03:42which will be a little more risky, but if well controlled,
03:46pregnancy can be carried on without particular problems.
03:52It has changed in a truly revolutionary way,
03:57but there is still no pill that cures us.
04:00This is what we hope for, what we hope for from research,
04:05because it would be nice if a young woman who has lupus for 20 years
04:09knows that from there to X years she will be perfectly cured.
04:13This, unfortunately, does not exist yet, but the quality of life is better.
04:17We expect, in the true sense of the word,
04:20our expectation is always to have new drugs as effective as possible,
04:25possibly with less side effects,
04:28because it is not a drug if there are no side effects,
04:31but that it can be administered on a large scale.
04:35This would be very important, they could take them all,
04:38a new drug that can work well on many,
04:42but it is impossible to take them all.
04:45Lupus is a disease that varies from person to person,
04:49so we have a great expectation for research.
04:53We are always very curious, we participate in conferences
04:56to hear what the doctors say based on these trials,
05:03we know who they are, so we are certainly very, very interested.
05:09We are here waiting for the pill.