La Mar is 61 years old. 11 years ago, he started to feel bad, but he couldn't find a doctor who could tell him what was wrong with him. From age 50 to 55, he went through countless consultations without success. The symptoms were worrying, yet strange: his facial features began to change (hard features; thick nose and lips...); his limbs grew; he had frequent tachycardia, severe apnea, hip pain, bone pain; he suffered a broken vitreous in both eyes with torn retina... "It was desperate, one thing after another", he explains to La Vanguardia. In the end, it was a relative, who had a friend who had suffered the same symptoms, who put her on the right track: acromegaly. Full on the 15th.
This rare pathology, whose international day was celebrated on Wednesday and which is estimated to affect around 3,000 people in Spain, is a disease of endocrine origin that is generated by the presence of an intracranial tumor, which is usually benign , in the pituitary gland (an endocrine gland). "This results in an excess of growth hormone production in adulthood," explains Dr. Inmaculada González, an expert in pathology. When it is suffered in pediatric age, it is called gigantism: the person is in growth age and grows in height. But when the sufferer is an adult (who no longer has the ability to grow) it is called acromegaly and is expressed in another way.
The symptoms that Mar had are typical of the disease, which "affects the muscles, the bones, the heart, carries a greater risk of diabetes, hypertension...", González relates. There is also an increase in the size of the limbs and facial changes. Even the tongue gets bigger.
"Everything grows", emphasizes Dr. Antonio Picó, another specialist in this condition. And he doesn't lack reason. Organs also grow. The heart, without going too far. Hence, perhaps, the tachycardia that Mar suffered from. "When a heart grows", Picó argues, "in the end it ends up failing". The same goes for bones. "If those of the spine grow, they deteriorate and arthrosis arises". And with the lung. "When they grow, patients breathe worse and need devices at night. All this leads to a very high risk of heart failure".
Tumors also increase in size, if they are present. "If you suffer from cancer, excess growth hormone can promote its progression. In fact, although not all authors agree, the frequency of tumors in the population with acromegaly is greater than in the general population", asserts Picó.
One of the problems with acromegaly is late diagnosis. It can take ten years until detection. "Clinical suspicion is the most difficult", affirms González. And clearly, in the meantime, the pathology is progressing, and the growth of the patient's body during this time is no longer reversible. Not even when it's cured or, if you can't, when it's controlled. And this is the good news: this disease has a cure and, if it cannot be cured, treatment. "It is an injury that occurs in the head, in the skull. With the intervention of a good surgeon, and if the injury is not very large and is completely dried [extirpated], the disease is cured", argues Picó.
In cases where it is not possible to intervene or the intervention cannot completely remove the tumor - due to the size of the lesion or its location - there are medical treatments that, combined, allow up to 90% of patients to be controlled have been cured with surgery.
"Thanks to the treatment, the limbs stop growing, but they don't shrink," recalls Picó. "If you use a foot size 45 and before you used a 43, you will not return to the 43. You will not reach the 48 either. You will stay with the 45".
Mar had her tumor removed in 2018. She is cured. But the sequelae he suffers prevent him from working: he has reduced mobility. It's hard for him to get around. "I have a lot of hip pain and I don't move very well." He says that everything is caused by the disease, which has caused degenerative arthrosis in his hip. Also loss of vision. "I see very little of it."
He explains that, due to his situation, he has applied for disability, but he was recognized as only 25% disabled, and does not reach the minimum of 33% (which entails a series of benefits, although not the right to receive a pension). He does not rule out going through the judicial process.
She explains that she is the one who is "costing" her well-being: "I have to pay for the physiotherapist, which is not cheap, and all this without working (because I can't) or receiving any help". Of course, every eight months they do a comprehensive review through public health. Thanks to these reviews, they found two small tumors, in the pancreas and liver. "It's the only good thing about pathology: they look down on you."
La Mar was lucky that, in her case, they were able to remove the tumor. Almudena (43 years old) did not have the same luck. He was diagnosed with the disease at 26, although he had been suffering from it for 10 years without knowing it. "Just the year before they told me what I had, I was suffering from very bad headaches," he explains. That is why they referred her to the neurologist, who detected the tumor in the pituitary gland through a scanner.
They did a first intervention to remove it. Shortly after, a second one, since they couldn't remove it completely in the first one. But it wasn't entirely successful either, so she underwent radiation therapy. Later, he began taking medication to control the condition.
In addition to migraines, Almudena, who is the secretary of the Spanish Association of Acromegaly sufferers, presents other symptoms: growth of the limbs and jaw; apneas, albeit moderate ones (he doesn't need a sleep machine, unlike Mar, who used one for years). He also does not suffer from coronary problems. Every two years they do an ultrasound to check that the tumor does not grow.
He leads a completely "normal" life (unlike Mar). Engineer by career and profession, she has never had to stop working.
