2023-05-10 09:09:19
Lupus is a chronic autoimmune disease that affects 96,000 people in Spain. The vast majority women. Patients raise their voices to demand early and multidisciplinary care, more research, better access to new therapies, review of the assessment of disability and public financing of sunscreens, among other demands.
On World Disease Day, in EFEsalud we talk with the Spanish Federation of Lupus (Felupus)which tells us about the needs of patients for whom, at the moment, there is neither a cure nor an effective treatment to prevent the long-term damage caused by the pathology.
When the body attacks itself
Lupus is a disease of the immune system in which our body’s defense mechanism attacks itself and creates an excess of antibodies, which causes inflammation and affects organs and tissues such as the skin, muscles, joints or bones. kidneys, among others.
The symptoms vary greatly from one patient to another, but the best known affect the skin. There is no cure, but it can be controlled with drugs that can regulate the immune system and stop inflammation.
Early diagnosis and coordinated and multidisciplinary care
Precisely because it presents a range of symptoms, the disease can go unnoticed by health professionals, according to Felupus, thereby delaying the diagnosis.
And it can be delayed up to four years, according to the member of Resources of Felupus, Pilar Lucas. For this reason, the patients request in a first point of a manifesto the guarantee of an early detection and greater training of Primary Care.
Patients claim that this delay in diagnosis it can cause “irreversible structural alterations” and that, with adequate training, Primary Care professionals can “awaken” suspicion and detect the first symptoms of the disease.
“Let there be coordinated and multidisciplinary care and psychological support,” continues Lucas as the second point of the manifesto. And it is that, as he emphasizes, patients with lupus have to be in the hospital for a long time undergoing tests because among the specialists “there is no coordination.”
Research and access to new therapies
They also consider it essential increase in both public and private funds for disease research.
Lucas assures that there are medicines but those targets that “do not do so much damage to the body” are missing. One of the drugs is to hydroxychloroquine, which as a side effect can affect sight. The vocal of Felupus, with the disease for 40 years, had to be removed.
Also cortisone but its long-term use can have consequences. “I’ve had lupus for many years, I’ve taken a lot of cortisone and it helps, but it causes osteoporosis, as well as dental problems,” explains Lucas.
That is why lupus patients urge that their access to new therapies be guaranteed.
In this sense, in the manifesto, which they also presented in an act in front of the Congress of Deputies, they highlight that progress has been made in recent years in the treatment of the disease but they ask that they be available according to clinical criteria “without being conditioned by the place of residence or assigned hospital”.
“Here coffee for everyone, because lupus, like any disease, you don’t love having it and we have the right to access new therapies regardless of which community we live in,” says the member of Felupus Resources.
Disability, financed sunscreens…
and how is a disabling disease, those affected request a correct review of the disability assessment and specialized training for the personnel involved. They consider that it is necessary to recognize “the accumulated organic damage that includes exhaustion and daily pain.”
“Patients with lupus have supine fatigue. I have several affected organs. If you have a flare-up, you need to rest in order to recover. Many of us cannot work an eight-hour schedule each day,” says Lucas.
Added to all this is the fact that the sun is a trigger for lupus flare-ups, so patients should be using sunscreens. Thus, they request that these products be considered as treatment of the disease and be financed by public health.
In some communities, associations included in Felupus have reached agreements with pharmacists so that photoprotectors are reduced by 50% for patients.
tinted car windows
Lupus patients are the only ones who Can car windows be fitted with ultraviolet filters? since 2011. But they ask for the expansion of the automobile laboratories authorized to do so.
For its legalization and installation, the manifesto details, a test to determine the light transmission factor of laminated glass is required. And in this sense, they see it as necessary to increase the number of authorized laboratories by province “to avoid inequality in access and laborious displacements.”
For all this, The cat in a campaign, together with AstraZeneca, under the slogan “Don’t let lupus win. Release hope!” They encourage not to give up and ask to walk together in the face of this disease.
“There is a wolf among us”
And also on the occasion of World Day, lGSK pharmaceutical with the support of Felupus and the Spanish Society of Rheumatology (SER) have released a campaign with the slogan “There is a wolf among us” and which includes a short film with the same name.
The objectives of the short are to make the disease visible, raise awareness about the early approach and support patients.
And it is named like that because of the meaning of the Latin word “lupus”, which means wolf and for which the disease is named. This is because early records used the term to describe facial lesions that resemble a wolf bite.
The short shows the testimony of people living with lupus and wants to reflect the path of a patient throughout her illness.
It addresses issues such as ignorance of the disease, how it affects the day of patients and the importance of associationism.
#Lupus #patients #speak