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There is a disease that can be seen with the naked eye, and yet it takes years to diagnose. Enlarging hands and feet, changing facial features, including a widened nose, thickened lips and a strongly defined lower jaw, an oversized tongue – these are just some of the symptoms of acromegaly. What keeps growing bones and soft tissues from growing long ago? It is caused by a pituitary tumor that is secreting excess growth hormone. However, despite the characteristic, noticeable symptoms, in Poland acromegaly is still diagnosed too late – even up to 10 years after the first symptoms appear.
Although the oldest descriptions of giants can be found in ancient papyri, the Bible or the Torah, acromegaly was first described only in 1886. It was done by a French doctor, who gave the disease a name derived from the Greek words “acron”, meaning limb, and “megas”, meaning great. However, he was unable to indicate the cause of its occurrence. A year later, it was discovered by a doctor of Polish origin, Oskar Minkowski, who noticed that acromegaly was associated with the presence of a pituitary tumor.
The king of ancient Egypt from the 197th Dynasty, the pharaoh Amenhotep IV, who was distinguished by a specific face structure – prominent eyebrow arches, enlarged lips or protruding forward, overgrown jaw – probably suffered from acromegaly. Some people suspect that one of the US presidents, Abraham Lincoln, may have suffered from acromegaly. He was XNUMX cm tall, with long arms, unusually large feet and hands.
A disease with different faces
Acromegaly is a rare, slowly progressive and insidious disease. As emphasized by prof. dr hab. n. med. Marek Bolanowski, specialist in the field of internal diseases and endocrinology, head of the Department and Clinic of Endocrinology, Diabetology and Isotope Treatment, Medical University of Piastów Śląskie and the Clinic of Endocrinology, Diabetology and Isotope Treatment of the University Clinical Hospital. Jana Mikulicza-Radeckiego in Wrocław, it is the same appearance that makes acromegaly dangerous. As a result of excessive secretion of growth hormone in patients, not only the growth of soft tissues, bones and internal organs occurs, but what is worse, the development of many systemic complications, contributing to the shortening of life.
The consequences of an untreated or ineffective treatment of the disease include: arterial hypertension, cardiac hypertrophy, valvular disease, pre-diabetes or diabetes mellitus, vertebral fractures, cancer, sleep apnea syndrome and other hormonal disorders. Cardiovascular disease is the major cause of premature mortality in acromegaly patients. Colon polyps (precancerous condition) and thyroid tumors are more common in acromegaly. Acromegaly significantly worsens the quality of life of patients due to unfavorable changes in appearance, persistent headaches, joint pains, difficulties in moving, limited social contacts, and often difficulties in finding a job. Patients require psychological support as well as psychiatric treatment. “Our” patients are provided with comprehensive specialist care at the highest level. A patient with acromegaly, even successfully treated with surgery, remains under our control for the rest of his life, because the pituitary adenoma may recur at any time – explains Prof. Marek Bolanowski.
Diagnostics – why so late?
It is estimated that over 2 people suffer from acromegaly in Poland. people. As emphasized by prof. Marek Bolanowski, these data are not precise, as many patients still remain undiagnosed, not even knowing about the disease. Usually, it takes several years from the appearance of the first symptoms to the correct diagnosis.
The clinical symptoms of acromegaly are very characteristic, but their development is gradual, so they are difficult to notice by those who see the patient on a daily basis. Usually, a doctor who has known the patient for years and is accustomed to his / her appearance treats the patient’s hypertension, diabetes and other ailments without associating them with acromegaly. Very often, only a change of doctor, meeting with a friend after many years or information in the media speeds up the correct diagnosis. After each media campaign, we observe new patients reporting, either independently, under the influence of their immediate family, or under the guidance of other doctors. Patients explain their appearance by aging, gaining weight or other diseases, and the enlargement of the hands – by hard physical work – says prof. Marek Bolanowski.
Acromegaly – what do you need to know?
As emphasized by prof. Marek Bolanowski, the disturbing changes that should be noted include: enlargement of the hands and feet, forcing the enlargement of the rings or rings and changing the numbering of shoes, enlargement of the jaw, which results in the appearance of gaps between the teeth, enlarged tongue, which causes a change in color voice.
Looking at photos of a patient with acromegaly from the past, we can notice the changing, more prominent eyebrow arches, a noticeably wider nose and more prominent lips. Moreover, patients often complain of headaches, joint pain, increased sweating, persistent snoring and constipation. It may even lead to a reduction in the field of view and, which patients do not always want to talk about openly, a decrease in libido and problems with intercourse. Therefore, if you develop these characteristic symptoms, think about acromegaly.
If there is a justified suspicion of acromegaly, the level of insulin-like growth factor (IGF-1) should be measured, which should be used as a screening test. An abnormal (elevated) IGF-1 result is likely to allow the initial diagnosis of acromegaly, and then it is best to contact a center experienced in the treatment of acromegaly directly. In Lower Silesia it will be our clinic, we will provide detailed hormonal and imaging tests important for the optimal treatment of the patient. Early diagnosis and treatment of acromegaly can ensure its effective treatment, thus avoiding health and life-threatening cardiological, metabolic and oncological complications, explains Prof. Marek Bolanowski.
Where to treat acromegaly in the Silesian Voivodeship?
In the Department of Endocrinology, Diabetology and Isotope Treatment of the University Teaching Hospital Jana Mikulicza-Radeckiego in Wrocław, patients suffering from acromegaly have been treated for over 30 years.
We find the therapy more and more effective, and we publish our observations and achievements in Poland and abroad. I participate, as the only representative of Poland, in the activities of the Acromegaly Consensus Group and other national and international advisory bodies. After each group meeting, current recommendations for the management of acromegaly are published. We try to introduce them in the country as much as possible. Thanks to the activity of the community, modern drugs used in acromegaly are available to Polish patients. In addition, we have been participating in clinical trials of new drugs for years, so our patients have access to the latest therapies, says Prof. Marek Bolanowski.
Currently, over two hundred patients in various stages of the disease are under the care of the Clinic. Annually, a dozen or so new cases are diagnosed. In addition to patients from the Dolnośląskie Voivodeship, doctors from the Lower Silesian clinic look after patients from the Opolskie, Lubuskie, Łódź and Greater Poland voivodeships, and even from the USA.
In the Lower Silesian center, patients with acromegaly have access to quick diagnostics and the possibility of using modern pharmacotherapy. The clinic cooperates with the best neurosurgery and radiotherapy centers.
We are the authors of guides for patients with acromegaly, there are accessible information about the disease, its causes and treatment options, as well as tips on how to “live with acromegaly” and how the patient can improve their health and prognosis – comments Prof. Marek Bolanowski. – Awareness campaigns are very much needed because the recognition of acromegaly in Poland is still lower than in other countries. This applies especially to men, in our environment we can expect even several hundred men with undiagnosed disease, in whom it is constantly progressing, and with it complications that pose a serious threat to health and life develop – emphasizes Prof. Marek Bolanowski.