Tag Archive for: pituitary

2025 Blogs & Vlogs 2 – Pituitary Gigantism: Acromegaly in Children and Adolescents 

In this second edition of the 2025 WAPO Blogs and Vlogs series, we are lucky enough to be joined by Professor Márta Korbonits, from the Barts and London School of Medicine at Queen Mary University of London, who is an expert in pituitary gigantism and its genetic causes. Prof. Korbonits explains how this very rare disease is diagnosed and treated and the importance of early multidisciplinary management. She equally talks about the key elements required for a successful transition from pediatric to adult care and how to ensure the best outcomes for patients.

This article provides a summary of the Vlog interview that you can find in English and Spanish on the WAPO website’s Library and YouTube channel.

Can you provide us with a definition of pituitary gigantism and how it differs from acromegaly in adults?

Prof. Korbonits began by explaining that, historically, acromegaly and pituitary gigantism were considered separate diseases. However, researchers later realized that they are actually the same condition, primarily caused by a pituitary tumor (a growth hormone-secreting pituitary adenoma), with the difference being whether the disease starts in childhood/adolescence or adulthood.

Many childhood-onset cases have an identifiable genetic cause, and from this perspective, they differ slightly from adult-onset cases. However, in terms of disease mechanism and what actually happens in the body, she emphasized that pituitary gigantism and acromegaly are the same disease.

When should pituitary gigantism be suspected in children and how is the diagnosis confirmed?

While many might think that pituitary gigantism would be easy to diagnose due to the extreme height of patients, it is actually quite challenging. Prof. Korbonits described how growth patterns vary, and a child growing quickly may not necessarily have the disease. When evaluating a potential case, she stressed the importance of asking about the presence of any additional symptoms such as headaches, joint pain, excessive sweating, acne, sleep difficulties, or delayed puberty, which could be an indication of pituitary gigantism.

The most important measure to evaluate is the child’s growth velocity. Growth charts can be helpful, and she often asks parents to send her their child’s height measurements (such as the height marks made on a door frame) to track growth trends over time, and compare them to percentile lines. Height velocity is also influenced by pubertal hormones, so correlation with those need to be carefully looked at. Normal body height is a highly genetically determined parameter, therefore the height of the parents is important to place the child onto a normally expected growth chart line. If a child’s growth rate appears excessive, further testing is needed.

Beyond growth hormone excess, there is another reason a pituitary tumour can lead to extreme height: delayed or absent puberty. Normally, puberty triggers sex hormones that both accelerate and eventually stop bone growth by closing the growth plates (a process called epiphyseal closure). This process is regulated by the luteinizing hormone (LH) and follicle-stimulating hormone (FSH), which are released from the anterior pituitary gland and control the function of the ovaries and testes. However, a large pituitary tumor can damage the cells responsible for producing LH and FSH, preventing puberty from occurring. Furthermore, in about a third of the cases growth hormone can be released together with another pituitary hormone called prolactin and this hormone inhibits LH and FSH release. As a result, bones do not fuse and patients can continue growing beyond the usual age, sometimes reaching extraordinary heights while showing signs of incomplete puberty (such as lack of facial hair in men and lack of periods in women).

The key biochemical tests used to confirm a diagnosis include measuring levels of growth hormone (released by the pituitary gland) and insulin-like growth factor-1 or IGF-1 (released throughout the body, but levels measured in the blood mostly come from the liver).

These two hormones work together to stimulate the growth plates in the bones to grow. Since growth hormone is secreted in pulses, a single test may not be reliable. To account for this, doctors often perform a glucose suppression test, where the patient drinks a sugary solution. In healthy individuals, this suppresses growth hormone levels, but in patients with a growth hormone-secreting tumor, this suppression does not occur. IGF-1 levels also vary by age and pubertal stage, so interpreting results requires expertise, often from a pediatric endocrinologist. She also suggests that “pediatric endocrinologists may wish to discuss their case management with an adult pituitary endocrinologist, because they have extensive experience with patients with growth hormone excess.”

Finally, if clinical signs and biochemical tests are suggestive of pituitary gigantism, a targeted magnetic resonance imaging (MRI) scan with contrast is performed to identify the pituitary tumor responsible for the disease.

What are the current treatments for children/adolescents with pituitary gigantism?

According to Prof. Korbonits, the primary treatment for pituitary gigantism, in most cases, is surgery and that “it is absolutely crucial that an expert surgeon with experience in treating patients with a functioning pituitary tumor operates on these patients”. If the patient is young, a pediatric neurosurgeon may also be needed.

Pre-treatment with medication before surgery is sometimes an option, but is not always necessary. She also mentions that even in cases where complete tumor removal is impossible, surgery is still recommended as reducing the tumor size can help prevent complications and improve the efficacy of future treatments.

If surgery does not fully cure the patient, there are three types of medications available:

  • Dopamine agonists, like cabergoline, which can be used when hormone levels are only slightly elevated or when prolactin is also being secreted alongside growth hormone (this happens in about one-third of cases).
  • Somatostatin analogs or somatostatin receptors ligands (SRLs). First-generation SRLs include drugs such as octreotide and lanreotide, while second-generation SRLs, such as pasireotide, are rarely prescribed in children but can be used in some exceptional cases. This group of drugs helps to lower hormone levels and may reduce tumor size or at least stop it from growing further.
  • A growth hormone receptor antagonist called pegvisomant, which blocks growth hormone from acting in the body. This drug is very effective in normalizing IGF-1 levels and this is crucial for avoiding severe long-term complications of the disease. However, unlike somatostatin analogs, it does not have an effect on tumor growth. Therefore, patients on pegvisomant require careful monitoring, and if the tumor continues to grow, further surgery, radiotherapy or the addition of an SRL may be necessary.

In the past, radiotherapy was a primary treatment due to the lack of other medical options, but today it is generally avoided in young patients and reserved as a last resort for aggressive cases or when other treatments are not effective.

When should planning for the transition from pediatric to adult endocrinology care take place?

The importance of a smooth transition from pediatric to adult care for patients with pituitary gigantism cannot be overemphasized. Prof. Korbonits explained that the period following the completion of puberty (either spontaneous or medically induced) is often a natural moment for this transition to take place, taking into account that different countries follow different rules.

Since adult endocrinologists encounter growth hormone excess more frequently, she advises that they should be a part of the multidisciplinary team before the formal transition to adult care (usually around the age of 16-18). Conversely, if a patient has not yet gone through puberty, pediatric specialists may continue guiding the process while coordinating with adult doctors. She concludes by saying, “collaboration between pediatric and adult endocrinologist for the care of patients with gigantism, or all patients with a pituitary tumor, is absolutely key to ensure the best treatment and the best management for these patients”.

What are the long term effects of pituitary gigantism and how are they managed?

Prof. Korbonits emphasized the serious long-term effects of untreated pituitary gigantism and the importance of early treatment. If a child is diagnosed and managed early, they can have a good life expectancy with fewer complications. However, the longer they are exposed to excess growth hormone, the greater their risk for complications.

One major complication is extreme height, which can lead to joint pain, neuropathy, early joint replacements, and bone structure issues. These can include a high risk of fractures, the most serious being fractures of the vertebrae (which can lead to spinal deformities).

With prolonged growth hormone excess, secondary hypertension, cardiac muscle disease and diabetes can also occur, usually not presenting until late adolescence or adulthood. Large tumors pressing on the optic nerves can also cause permanent visual field defects, if left untreated. Pituitary apoplexy, a sudden hemorrhage within the tumor, is an acute complication that can destroy normal pituitary function, leading to severe hormone deficiencies and vision loss.

Prof Korbonits also pointed out the psychological impact of excessive height, stating, “We shouldn’t forget the psychological burden of being too tall on both sexes; very often patients feel uncomfortable being ‘stared at’. Females especially may encounter problems finding a partner and starting a family just because of their height”.

Prof. Korbonits highlighted that extremely tall patients were more common 100 or 200 years ago (for example, Charles Byrne, known as “the Irish Giant”). Thanks to advances in medical treatment, which have significantly improved outcomes, we rarely see such extreme cases today.

What factors influence the prognosis of children with pituitary gigantism?

The prognosis of gigantism depends on several factors but the most important is how early the condition is diagnosed and treated. If diagnosed early, the tumor may be confined to the pituitary fossa, allowing for complete surgical removal without the need for further therapy, which significantly improves quality of life. If it is diagnosed later, this often results in a larger tumor, which increases the likelihood of damage to the rest of the pituitary gland. This can result in hormone deficiencies requiring lifelong hormone replacement therapy, difficulties with puberty and fertility, and, if radiotherapy is needed, a higher risk of complications such as cerebrovascular disease (which can result in stroke) and secondary tumors.

Finally she brought attention to the fact that half of gigantism cases have an identifiable genetic cause (such as the AIP gene). While this may not always change the management options, genetic screening allows for the early detection in family members, potentially preventing complications, and thereby improving the prognosis for those individuals.

She concluded by saying that a childhood-onset growth hormone secreting tumour remains an extremely rare disease. Unlike in the past, with the help of modern diagnostic tools and treatments, no patient should end up today as a ‘giant’. Screening, collaborative, multidisciplinary care between pediatric and adult endocrinologists and access to the right medications and treatments are needed in order toachieve this goal, and she confirmed that “this is something which is now possible, and we hope that it will be available for every patient in the world.”

We would like to express our heartfelt gratitude to Professor Márta Korbonits for taking the time to talk to us about this rare and relatively unknown pituitary disorder. If you would like to learn more about pituitary gigantism or about Prof Korbonits’ research (or take part in one of her studies), please take a look at the additional resources below and contact bartshealth.goetstudy@nhs.net.

 

Additional resources

Familial Isolated Pituitary Adenoma (FIPA) information page: https://www.qmul.ac.uk/fipa-patients/

Read the book, In Search of Giants: The Quest to Find the Genetic Giants of Northern Ireland: https://www.insearchofgiants.org/

Learn more about the Genetics of Acromegaly and Gigantism

Watch the BBC documentary on Charles Byrne, the Irish Giant

Legends and Facts: Population Screening for AIP mutations in Northern Ireland

 

 

Dreams Survey – Understanding Sleep Quality in Patients with Pituitary Disorders (with a Focus on AVP Deficiency/Diabetes Insipidus)

This anonymous survey is conducted by the research team of Prof. Mirjam Christ-Crain in Basel, Switzerland. The goal is to better understand how pituitary disorders, especially AVP deficiency (also known as Diabetes Insipidus), affect sleep quality. Although treatment options exist, many patients still face sleep difficulties, and we aim to learn more about these challenges.

The survey is designed to help us gain a clearer picture of sleep problems in people with pituitary conditions, enabling us to develop further research in this area. It is completely anonymous, and no personal data will be collected beyond your survey responses. The survey only takes 5-10 minutes to complete, and your answers will be stored and analyzed confidentially. The findings will be shared in medical literature and on patient representative platforms.

Additionally, the survey will explore how sleep quality and sexuality impact overall well-being. A few optional questions about sexuality will be included at the end, which you may choose to skip if you prefer. Your participation, whether you choose to answer all the questions or just some of them, is highly valued and will contribute to a deeper understanding of the quality of life for patients with pituitary disorders.

The survey is available in English and German.

If you are interested to participate in the study, please click here:  https://redcap.dkfbasel.ch/surveys/?s=KNJHNN7WEDCMJYFL

2024 WAPO Blogs and Vlogs: Mid-Year Recap and What’s Coming Next

As we approach the halfway mark of 2024, we thought it would be the perfect time to provide a comprehensive recap of the 2024 WAPO Blogs and Vlogs series and give you a preview of what’s coming this fall. Whether you are a patient, healthcare professional, or someone simply interested in learning more about pituitary disorders, there is something for everyone!

Topics already covered to date: catch up on what you missed

We started the year with an informative blog article on Navigating Nutrition and Pituitary Disorders in January. This blog explored the pituitary gland and its hormones, the role that diet plays in maintaining hormone health and shared recommendations to help balance your hormones and improve your overall wellbeing when living with a pituitary disorder.

In February, we released the first vlog on the topic of what makes a successful patient-healthcare professional relationship? This video featured Els Rutten, a genetic counselor and endocrine nurse, who shared what she believes to be the foundation of a successful relationship between patients and healthcare professionals. She provided useful tips for healthcare professionals and provided examples of the positive effects that making some changes can have on patients and their families. This video goes beyond the pituitary community as her advice is invaluable to all healthcare professionals wishing to improve their patients’ experience and quality of life.

Watch it again on the WAPO YouTube channel in either English or Spanish.  You can also find them in the WAPO library.

In March, Clive Deverson shared important information and resources covering a topic that is of great interest to the patient community: Collaborations between Patient Advocacy Groups and Pharmaceutical Companies.  He detailed the restrictions and challenges facing the pharmaceutical industry when it comes to working with patients as well as current trends in this area. He equally shared several toolkits and resources that patient organizations can refer to for their future collaborations with the pharmaceutical industry.

In April we were joined by Patricia Gildroy for a vlog entitled Shining Light on Arginine Vasopressin Deficiency (AVP-D)/ Central Diabetes Insipidus. Patricia is lead administrator for the Facebook group Got Diabetes Insipidus? Got Arginine VasoPressin Deficiency (AVP-D) or Resistance? And in this video she shared her personal story with AVP-D, how to avoid potential complications, and the need to better inform healthcare professionals of AVP-D, as it is still frequently confused with diabetes mellitus. This video is a great one to share in order to raise awareness for this rare disease.

Watch it again on the WAPO Youtube channel in either English or Spanish. You can also find them in the WAPO library.

For the next blog article, which was released in May, we outlined our Top Tips for Travelling with a Pituitary Disorder. This article gives patients with pituitary disorders a useful guide to ensure their travels are as stress-free as possible. From what important documents to bring (such as emergency cards, a medication passport or other awareness material) to adjusting to a new time zone, it’s the perfect article to read before and during your summer vacation this year.


Preview of what’s still to come: sneak peak

 Coming August 29th, 2024 we will release our 3rd vlog entitled Cushing syndrome comorbidities: priorities for patients vs. priorities for the healthcare professional. This is one you will not want to miss as we will have the unique perspectives of both an endocrinologist (Dr. Noa Tal) and a patient (Ms. Haleh Sharafi) on the comorbidities that are associated with this condition and how they have an effect on a patient’s quality of life.

The first blog this fall will be on the topic of Gigantism and Acromegaly: Long term consequences after the disease is “cured”. Diagnosis and treatment are just two parts of a patient’s journey with these pituitary disorders and we will cover the long term consequences that equally need to be considered and managed.

Then in October we will release a vlog on the topic of Thriving during pregnancy and Motherhood with a pituitary disorder. The Maternal Pituitary Support group will share their experience and provide valuable information and support for expectant mothers and mothers living with a pituitary disorder. This will be an enlightening video for anyone interested in maternal health, fetal development and the complexities of hormonal balance for women with a pituitary disorder.

In November, we will publish a blog article on why raising awareness for pituitary disorders is so important. Expect an informative article on why these disorders deserve more attention, how sharing knowledge can literally save lives, and how to spread the word to your community.

Finally to end the year, we will present a vlog that explores acromegaly in a unique way, with the participation of several members of the WAPO patient and medical community. You can access a wealth of information on acromegaly or other pituitary disorders on our website. That is all we will reveal for the moment, but it will definitely be a vlog that is worth the wait.

Now that you’re up to date with our mid-year recap, we hope you are as excited as we are about the upcoming content in the WAPO Blogs and Vlogs series for 2024. We have tried to cover a variety of pituitary disorders and topics that are of interest to our community, but please feel free to send us your feedback.

Finally, as a reminder, this year we also created the WAPO YouTube channel so that our videos could reach a larger audience. If you haven’t already, please subscribe to our channel in order to be the first to see the new vlogs released. We also encourage you to follow us on website WAPO.org as well as our social media accounts, LinkedIn, Facebook, Instagram and X (formerly Twitter), in order to stay up to date with all of our latest news and events. Stay connected to ensure that you don’t miss out on any of the 2024 WAPO Blogs and Vlogs.

Let’s continue to explore and understand the complexities of pituitary disorders and raise awareness among health care professionals and the general public of these rare conditions. It is together that we can work towards improving the lives of people living with a pituitary disorder.  We wish you a happy and healthy summer, filled with relaxation, rejuvenation and inspiration.

 

 

 

International Hypothalamic-Pituitary Brain Tumors Patient Registry

The Raymond A. Wood Foundation (RAWF), in collaboration with the National Organization for Rare Disorders (NORD®), is thrilled to announce the launch of the International Hypothalamic-Pituitary Brain Tumors Patient Registry. The registry provides a unique platform for patients worldwide to unite their voices and share essential information about rare hypothalamic-pituitary brain tumors, to advance research and guide the development of treatments for critical unmet needs of our community.

The web-based and secure registry consists of a series of longitudinal surveys to gather information from patients or caregivers/legal representatives on the natural history of rare hypothalamic-pituitary tumors, including demographics, health challenges, diagnoses, medical history, hunger behavior and other disease-related information.

RAWF is building the registry in stages around research projects. At this time, the registry is focused on craniopharyngioma and will include other hypothalamic-pituitary brain tumors in the future. The current registry study aims to collect data from patients or caregivers to better understand and characterize hunger, appetite and eating environment of individuals with craniopharyngioma, including hypothalamic obesity.

De-identified, aggregated data from the Registry will be shared with academic and industry collaborators conducting research and/or clinical trials on new therapies. Third parties will be granted access to de-identified Registry data according to the guidelines of the Hypothalamic-Pituitary Brain Tumors Patient Registry Advisory Board, and an independent IRB providing ethical oversight for Registry activities.

For more information on how to participate or learn more about the Hypothalamic-Pituitary Brain Tumors Patient Registry, visit https://hptumorregistry.iamrare.org or www.rawoodfoundation.org/HPTumorRegistry/.

Thanks in advance for your help in supporting our mission.

 

Navigating Nutrition and Pituitary Disorders

The New Year often starts with well intentioned resolutions. One of the most common resolutions involves improving our diet. While maintaining a healthy diet and lifestyle is a good goal for everyone, it is even more important for people with a pituitary disorder who are more susceptible to certain cardiovascular and metabolic complications.

This first WAPO blog of 2024 will cover how nutrition plays a role in the overall wellbeing of patients with pituitary disorders and will explore the intricate relationship that pituitary hormones play in maintaining our health.

The pituitary gland and its hormones

The pituitary gland, often called the “master gland”, is located at the base of the brain and controls several hormone glands by releasing hormones that are responsible for various bodily functions including growth and metabolism, water balance, reproductive health and our response to stress.

A disorder of the pituitary gland leads to either too little or too much of one or more of these important hormones being produced. One of the main causes of pituitary disorders is a pituitary adenoma, which is a benign tumor of the anterior pituitary. If the tumor is “functioning” (secretes hormones) it will lead to an excess of that hormone in the blood. For example, a pituitary adenoma that secretes adrenocorticotropic hormone (ACTH) will cause an increase in ACTH levels in the blood, which in turn stimulate the adrenal glands to produce excessive amounts of cortisol, resulting in Cushing disease. If the pituitary adenoma is “non-functioning” (does not secrete hormones) it may still disrupt the functioning of the pituitary gland and therefore the production of one or more hormones. Hypopituitarism is the term used when the pituitary gland is not producing (or producing only small amounts) one or more of its hormones.

Diet plays a major role in maintaining hormone health, with the food we eat having an impact on our hormones and consequently on the evolution of a pituitary disorder.

Nutritional recommendations for hormonal harmony

Each pituitary disorder is unique; however, there are some common nutritional recommendations that can be followed to ensure optimal health for everyone. Starting with:

  • Eating a healthy, balanced diet with a variety of non-processed foods including:
    • Whole grains for dietary fiber and complex carbohydrates such as brown rice and whole-grain bread;
    • Protein-rich foods (e.g. meat, fish, eggs, dairy or plant-based proteins);
    • healthy fats (found in nuts, seeds, and avocados)
    • Foods rich in essential vitamins and minerals such as calcium (in dairy products, salmon, leafy green vegetables) and vitamin D (in oily fish, egg yolk, fortified cereals) for bone health; iodine (in iodized salt and seafood) to maintain thyroid function; magnesium (avocadoes, seeds and legumes) as it plays a role in modulating the hypothalamic-pituitary-adrenal (HPA) axis; manganese (in nuts and leafy vegetables), as it is important for normal growth and reproduction; potassium (apricots, lentils, potatoes, tomatoes), which plays an essential role in cardiac function and regulates fluid balance, etc.
  • Reducing the amount of foods you consume that are high in refined sugars and sodium
  • Limiting your alcohol intake
  • Making sure to drink enough water (4-6 cups of water a day)

While there is no special diet for patients with a pituitary disorder, those at risk of certain complications related to their disease may benefit from adding or restricting certain foods from their diet. A recent study, for example, showed that a very low-calorie ketogenic diet and a low-carbohydrate ketogenic diet are effective in improving the metabolic and cardiovascular comorbidities seen in Cushing Disease (CD), when combined with conventional CD therapy.

There are several complications which have been associated with pituitary disorders, such as:

  • Obesity

While obesity is a problem in the general population, it is also associated with several endocrine disorders such as hypothyroidism, Cushing’s disease, hypogonadism, and growth hormone deficiency. Increased cortisol levels, as seen in Cushing’s disease, can cause weight gain. Monitoring of calorie intake may therefore be suggested in order to prevent weight gain and obesity. For more information on this topic watch the WAPO presentation Obesity, nutrition and latest insights by Professor Liesbeth van Roosen.

  • Osteoporosis

Osteoporosis is another complication of many pituitary disorders, including hypopituitarism, Cushing disease and acromegaly. Prolonged glucocorticoid use can also lead to reduced intestinal absorption of calcium and is a known cause of secondary osteoporosis. Adequate intake of calcium and vitamin D is therefore essential.

  • Cardiovascular comorbidities

Cardiovascular comorbidities such as hypertension, cardiomyopathy, heart valve disease and arrhythmias are also complications of certain pituitary disorders, such as acromegaly. A heart-healthy diet rich in fruits, vegetables, whole grains, lean proteins, omega-3 fatty acids and low in sodium can help manage blood pressure and may reduce the risk of developing cardiovascular complications.

  • Diabetes:

Diabetes type 1 is another possible complication of several pituitary disorders including acromegaly, prolactinomas, Cushing disease and growth hormone deficiency. Maintaining a healthy weight, keeping active and eating a healthy diet can help regulate blood sugar levels and prevent the onset of diabetes.

Other factors that have an impact on your hormones and overall wellbeing

  • Stress: Stress leads to the release of cortisol (the stress hormone) and chronic stress induces the redistribution of fat to the abdominal region which can counteract your healthy eating habits. Chronic stress is also linked to anxiety and depression as well as other chronic diseases. Try to reduce your stress levels as much as possible by practicing various coping mechanisms and relaxation techniques (e.g. meditation, journaling, etc).
  • Medications: Medications can have an impact on your hormones and your weight. Certain antidepressants, for example, can cause weight gain. Glucocorticoid replacement therapy, used to treat adrenal insufficiency, can also lead to unhealthy weight gain and metabolic perturbations by stimulating appetite and increasing preference for foods high in calories and fat. Talk to your healthcare provider about any side effects that you are experiencing (e.g. significant or unusual weight gain) so that the dosage can be adapted to your needs.
  • Sleep: Sleep deprivation is associated with increased levels of stress hormones, which affect metabolism and can lead to weight gain. Insufficient sleep can also worsen any fatigue you may already have, so aim to get 7 to 8 hours of sleep daily in order to feel well rested and at your best.
  • Physical activity: Regular physical activity helps maintain muscle strength and overall physical and mental health. It is also has anti-inflammatory effects and protects against stress-related disorders. Getting in 30 minutes of physical activity per day, 5 days a week is ideal. What’s most important is to avoid a sedentary lifestyle, so start moving your body with whatever exercise feels comfortable.

Finally, make sure to talk to your endocrinologist/dietician so that they can monitor your hormone levels and give you personalized nutrition tips that are tailored to your pituitary disorder and your individual needs. Everyone is different and maintaining close communication with your team of healthcare professionals is the best way to ensure optimal management and treatment for your condition.

Starting the year off right by eating a healthy and balanced diet may not be an original resolution but through informed decisions and proactive self-care, your unique nutritional roadmap can lead you towards an increased quality of life. And that is something we wish for everyone in 2024.

To learn about the various pituitary disorders, please refer to the WAPO website’s page on pituitary disorders.

 


Sources:

Esteves, Gabriel P et al. “Nutritional recommendations for patients undergoing prolonged glucocorticoid therapy.” Rheumatology advances in practice vol. 6,2 rkac029. 21 Apr. 2022, doi:10.1093/rap/rkac029

Guarnotta V, Amodei R, Di Gaudio F, Giordano C. Nutritional Intervention in Cushing’s Disease: The Ketogenic Diet’s Effects on Metabolic Comorbidities and Adrenal Steroids. Nutrients. 2023 Nov 2;15(21):4647. doi: 10.3390/nu15214647. PMID: 37960300; PMCID: PMC10649442.

https://www.healthline.com/human-body-maps/pituitary-gland

Ylli D, Sidhu S, Parikh T, et al. Endocrine Changes in Obesity. [Updated 2022 Sep 6]. In: Feingold KR, Anawalt B, Blackman MR, et al., editors. Endotext [Internet]. South Dartmouth (MA): MDText.com, Inc.; 2000-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK279053/

Mazziotti G, Frara S, Giustina A. Pituitary Diseases and Bone. Endocr Rev. 2018 Aug 1;39(4):440-488. doi: 10.1210/er.2018-00005. PMID: 29684108.

 

 

 

Patient Solidarity Day 2023

Patient Solidarity Day takes place each December. Thousands of people across the world rally around one topic relevant to the patient community and show support for the Day by raising awareness on social media and hosting activities to mark the campaign.

This year, on Friday, 8th December 2023 health stakeholders from all over the world will stand together to celebrate Patient Solidarity Day 2023 under the theme ‘Expert patients – the indispensable voice’.

On PSD 2023, we will celebrate the strength, resilience, and knowledge of expert patients who have taken control of their health journeys and contributed to health systems strengthening in various ways.

The empowered expert patient who has taken control of their health journey and is advocating for health systems transformation is an indispensable voice in the healthcare value chain.

We will use the occasion of PSD 2023 to invite the patient community from all over the world to share with us their views of who an expert patient is – what skills and assets make them an expert patient. With this feedback, we want to start shaping collectively and collaboratively a definition of the expert patient that truly translates the views and thoughts of patients worldwide.

Follow and join the buzz on social media – #PSD2023

Stay tuned for more resources to help you call for ‘Expert patients – the indispensable voice’..
Patient Solidarity Day 

Webinar on ‘Hypercortisolism’ by Dr Blevins Jr

The World Alliance of Pituitary Organizations (‘WAPO’) just released the third on-demand webinar of 2023, where Dr L. Blevins Jr. (US) will speak about the history and diagnosis of Hypercortisolism | Cushing’s.

Click here to watch Dr. Blevin’s presentation (English)
Click here to watch Dr Blevin’s presentation (Spanish)

Please also have a look in the WAPO ‘Library’ where you will find more presentations on pituitary related topics. These topics are discussed in the WAPO’s Webinar Series 2022  and 2023 as well as presented during our annual 2022 Global Summit.
All presentations are available in English and Spanish.

COMING SOON: 

April 27, 2023: ‘Depression and the pituitary patient: support for them and yourself’ by Linda Rio (Marriage & Family Therapist (MFT)

May 25, 2023: ‘Health Technology Assessment‘ by Realise Advocates

Rare Disease Day – February 28 2023

 

February 28, 2023 – Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.

Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.

WAPO supports Rare Disease Day with a webinar on ‘Pain and Stress’ by Emilio Covarrubias (Chile) in English and Spanish. Check our Library on the website wapo.org

Want to read more or download materials, click here

WAPO Website & 2023 Webinar Series

“Your diagnosis doesn’t have to define you!”  ….. well-spoken words by Ignas Meškauskas, Mental Health Coach in the Netherlands.. Ignas kick-started our WAPO 2023 Webinar series, with this impactful session entitled “My new identity after diagnosis”, with invaluable content for anyone with a diagnosis of a pituitary disease or long-term condition. ‘Acceptance’ is the keyword in this webinar and Ignas shares a lot of his own experience and supportive ideas that will help people with any diagnosis to accept their new reality.

We met Ignas last year at the WAPO Global Summit in 2022, where he translated for his Lithuanian friend . During the event, he became more and more involved with the speakers and delegates and with his knowledge and the benefit that he can bring to our community, he prepared his presentation for the 2023 webinar series.

The set-up for our series of 9 webinars in 2023 is different from 2022. This year, the webinars will be pre-recorded and released on the WAPO website, roughly each month (except for Summer and December).
We received requests from the WAPO pituitary community about the different time zones and availability of the webinars to share with other members and we feel that this new approach will solve this issue. The webinars will be made available– in English and Spanish – directly from the WAPO website, in the Library section, and in open access. You will find the direct links below the article as well as the planned webinar topics for the year.

You may also have noticed that the WAPO website has had a make-over in the past 6 months, and is available from 27th January onwards, via www.wapo.org (same address, new content!).
The Pituitary Disease section has been completely refreshed, with updated information and accompanying animated videos, which explain the diseases and treatment in an easy, engaging way. This has been made possible by the Federation of International Nurses in Endocrinology (FINE), with special thanks to Christine Yedinak!

Currently, we are looking for additional disease, or health and exercise content to add to our specific website pages, e.g. research outcomes, clinical trial information, etc.
Please feel free to send any information that you feel would be of interest to the community to mail@wapo.org and we will be happy to include on the website. The content doesn’t have to be in English but in any other language.

Discussed topics: 

Release Date 2023: TOPIC
January 27, 2023 Mental Health Support after Diagnosis
February 28, 2023 Pain in Pituitary Disorders
March 30, 2023 Hypercortisolism – History and Future
April 27, 2023 Transition – from Child to Adult Treatment
May 15, 2023 Hormones
June 29, 2023 Growth Hormone
September 2023, TBC How to Support a Depressive Patient
October 2023, TBC Medication Waste
November 2023, TBC Clinical Trials

 

 

 

Webinars 2022

Earlier in 2022, WAPO organized a series of webinars with interesting topics, which are visible in the WAPO Library. Now, since Summer is over, we have another 3 interesting webinars for you …

Register via the following link: https://cvent.me/eOyQ4D
Feel free to share with other patient advocates, people living with the disease or their caregivers, or other stakeholders. We look forward to meeting you there.

In case you are not able to join, or want to see the presentations later, please have a look at our Library with all webinars and video presentations we already had.

We are already scheduling webinars for 2023. Please follow our social media to stay informed.

Tag Archive for: pituitary