Tag Archive for: acromegaly

Walk with WAPO through the Experiences of People Living with Acromegaly

We are happy to announce the release of our new acromegaly awareness video entitled “Walk with WAPO though the experiences of people living with acromegaly”. This video was created for Acromegaly Awareness Day, which takes place on November 1st.

Watch it here: Walk with WAPO through the Experiences of People Living with Acromegaly
This project was made possible thanks to the generous participation of nine patient advocates who replied to our acromegaly survey back in September. They were then contacted and sent questions to answer by video. The resulting video is a compilation of their answers.

They cover many topics such as their first symptoms, their path to diagnosis, their treatment, and the impact of acromegaly on their lives and those of their family, to name a few.

By the end of the video you should have a better understanding of this rare pituitary condition and how it affects those living with it. No two stories are alike, but all wished for an earlier diagnosis and adapted treatments that will improve their quality of life.

A special thanks to David, Donna, Jeremie, Marell, Marie Louise, Martin, Mayulabis, Roz, and Sandra, the faces and voices of of this video, for their courage in sharing their stories.

We hope that you will share this video in order to raise awareness for acromegaly. Not only on November 1st, but all year round.

2024 WAPO Blogs and Vlogs – Why raising awareness for pituitary disorders is so important


October is Pituitary Awareness month and while this month may be coming to an end, raising awareness for pituitary disorders remains as important as ever. In this WAPO Blog we will cover some of the reasons why raising awareness for pituitary disorders is something we should all striveto do.

Because the pituitary gland regulates many of our body’s functions

The pituitary gland, a small structure located under the hypothalamus of the brain, controls the functions of the hormone-secreting endocrine glands throughout the body. Due to this ability to regulate the hormones of the body that act on various organs, a dysfunction in the pituitary gland can lead to imbalances that affect many of our natural processes, including growth, metabolism, and reproduction. Our mood and emotions can also be affected. These hormonal imbalances can lead to irreversible changes in the body and comorbidities that can have a significant impact on a patient’s quality of life and life expectancy. It is therefore crucial to raise awareness for the pituitary gland and the role it plays in our overall health and for the conditions that can cause it to dysfunction.

Because their initial symptoms can be mistaken for more common conditions

Some of the presenting symptoms of pituitary disorders can be non-specific and mimic other more common conditions. Adrenal insufficiency, for example, may present with fatigue, weakness, nausea and weight loss, which can be falsely attributed to anxiety or gastrointestinal problems. Cushing’s syndrome may present with weight gain, hypertenstion and fatigue, which can easily be attributed to obesity.

This means that many patients with a pituitary disorder often visit numerous doctors before receiving a correct diagnosis. In a recently published meta-analysis of multiple studies, the average time from symptom onset to diagnosis in patients with pituitary-related Cushing’s syndrome was 38 months. However, some patients have reported waiting as long as 20 years before being diagnosed.

This indicates that there is an urgent need to raise awareness for pituitary disorders in the medical community so that general practitioners can recognize specific patterns of symptoms and unusual presentations that may indicate a pituitary disorder.

Educating the general public about some of the “red flags”of pituitary disorders can also prompt people to ask their doctor about these signs or symptoms, hopefully decreasing their time to diagnosis. For example, “red flags” for prolactinoma include absent or irregular periods associated with milk production from the breasts (unrelated to pregnancy) in girls and sexual dysfunction in males. Some “red flags” for acromegaly include an increase in shoe size or enlarged hands with rings no longer fitting. Raising awareness for pituitary disorders is one way to spread this kind of valuable knowledge.

To increase the chance of early diagnosis and prevent long-term complications

The earlier the diagnosis of a pituitary disorder, the better the outcome.

Patients with acromegaly, for example, can suffer from comorbidities affecting the cardiovascular, respiratory, metabolic, neuropsychiatric, and musculoskeletal systems. These comorbidities can impact both their quality of life and their life expectancy, if the increased production of growth hormone (GH) and insulin-like growth factor-1 (IGF-1) is left untreated. However, if diagnosed and treated early, these comorbidities can be prevented or delayed.

Various studies have shown that the mortality rate in people with acromegaly reverses to that of the general population if adequate treatment is provided to normalize GH and IGF-1 levels.

In people with adrenal insufficiency, which is characterized a lack of cortisol production from the adrenal glands, early diagnosis is key when it comes to ensuring better long-term outcomes for patients. Firstly, being diagnosed early can save patients from presenting with a life-threatening adrenal crisis. Secondly, it allows them to start hormone replacement therapy in order to correct the glucocorticoid deficiency and help alleviate their symptoms. Finally, with a diagnosis they can receive patient education on how to adapt their medication in times of stress or illness and learn the importance of carrying an emergency hydrocortisone kit with them at all times.

In order for this to take place there needs to be more actions to ensure that primary care providers are aware of these diseases so that patients can be quickly referred to an endocrinologist for a timely diagnosis.

To break loneliness and isolation

When diagnosed with a pituitary disorder many people describe a feeling of loneliness and isolation due to the rarity of their disease. Depending on the specific condition, it may be difficult to find anyone living with the same disease in your area. This is exactly what Claire Barlow and Jennifer Kenworthy experienced after being diagnosed with Sheehan’s syndrome (postpartum pituitary necrosis). That was until they decided to create Maternal Pituitary Support in order to provide support to other women and advocate for maternal pituitary disorders (listen to their story in the WAPO Vlog here).

Finding a patient organization that supports people living with either their specific condition or group of conditions is an important step in a patient’s journey. Even when properly supported by their friends and family, nothing replaces the feeling of someone truly understanding what you and your family are going through. Having a group of people with lived experience, that can guide you through the day to day challenges you may encounter, is so important. Caregivers can also benefit from meeting others that care for someone with a pituitary disorder.

By raising awareness for pituitary disorders and the associated patient organizations, there is a better chance that patients and caregivers will find others like themselves and locate the right support groups that can improve their mental health and overall quality of life.

To empower patients to self-advocate

When we see others like ourselves in advocacy roles, we are more likely to want to join in, learn more about our condition, and share our stories. This is why the participation of patient advocates in awareness raising activities is so important. Patient advocates that share their experience of living with a pituitary disorder give others the courage to equally share their voice, creating a ripple effect of advocacy actions and empowerment.

Never underestimate the power that your story can have on someone else! This is why WAPO strives to share patient stories, such as in its WAPO Vlogs Cushing Syndrome Comorbidities: Priorities for Patients Vs Healthcare or Shining Light on Arginine Vasopressin Deficiency (AVP-D)/ Central Diabetes Insipidus.

To increase awareness around invisible disabilities

Like many rare diseases, pituitary disorders are often accompanied by invisible disabilities including fatigue, pain, sleep disturbances, and mental health disorders such as depression and anxiety.

Patients report that these invisible disabilities can have a significant impact on their quality of life. Lack of understanding from family members, co-workers or the general public can lead to feelings of isolation. Relationships can become strained if there is a lack of empathy or misunderstanding from people thinking that the patient should be “back to normal” after receiving treatment.

This is similar for patients with any chronic disease that carries an invisible disability, which is why taking the time to understand the invisible disabilities experienced by patients with a pituitary disorder can help you be more aware of this term and more compassionate towards others who share their invisible disabilities with you in the future. To learn more about invisible disabilities, you can visit the Hidden Disabilities website.

To increase access to specialized care

Because pituitary conditions have a huge impact on the body and multiple organ systems, it is important that they are treated by a multidisciplinary team with expertise in managing endocrine disorders. However, in some countries, no reference centers with expertise in pituitary disorders exist. Advocacy efforts led by patients gave rise to the creation of the European Reference Networks for Rare Diseases, and of ENDO-ERN (the ERN for Rare Endocrine Conditions) in particular, in 2017. Within this network, the healthcare provider members have all been recognized as reference centers for endocrine conditions and they can provide virtual consultations, through a dedicated platform, to doctors with patients in countries all across Europe. This allows for geographical inequalities, in terms of access to specialized care, to be decreased.

By raising awareness for pituitary disorders with healthcare professionals and policy makers, we can ensure that funding is provided to support and develop initiatives that allow patients to receive the treatment they need, no matter where they live.

Now that you have a list of reasons why raising awareness for pituitary disorders is so important, why not help us share information and advocate for the people living with these conditions.

You can start by sharing the four “Walk with WAPO” posters we created this year for Pituitary Awareness Month on Arginine-Vasopressin Deficiency, Cushing’s Disease, Adrenal Insufficiency and Acromegaly (download them here).

You can also make sure to follow WAPO on our social media channels so that you can share our posts with your network. Learn more about the many pituitary disorders on the WAPO website so that you can recognize their symptoms and educate those around you.

Together we can help to make the future brighter for all people living with a pituitary disorder!

 

References:

Rubinstein, German et al. “Time to Diagnosis in Cushing’s Syndrome: A Meta-Analysis Based on 5367 Patients.” The Journal of clinical endocrinology and metabolism vol. 105,3 (2020): dgz136. doi:10.1210/clinem/dgz136

Norman, Alyson et al. “Hidden disability: a study of the psychosocial impact of living with pituitary conditions.” British journal of nursing (Mark Allen Publishing) vol. 31,11 (2022): 590-597. doi:10.12968/bjon.2022.31.11.590

Brue, Thierry, and Frederic Castinetti. “The risks of overlooking the diagnosis of secreting pituitary adenomas.” Orphanet journal of rare diseases vol. 11,1 135. 6 Oct. 2016, doi:10.1186/s13023-016-0516-x

Gadelha, Mônica R et al. “Systemic Complications of Acromegaly and the Impact of the Current Treatment Landscape: An Update.” Endocrine reviews vol. 40,1 (2019): 268-332. doi:10.1210/er.2018-00115

Bleicken, Benjamin et al. “Delayed diagnosis of adrenal insufficiency is common: a cross-sectional study in 216 patients.” The American journal of the medical sciences vol. 339,6 (2010): 525-31. doi:10.1097/MAJ.0b013e3181db6b7a

Awareness for Pituitary diseases in October


WAPO will raise awareness for four pituitary disorders through infographic posters and social media carrousels in 2024.
The 4 posters focusing on Arginine VasoPressin deficiency, Cushing’s, Adrenal Insufficiency and Acromegaly will be released during October 2024, Pituitary Month.
Please also think of Acromegaly Day on November 1st!
On WAPO’s social media, you will also find carroussels with disease related information

Release dates: 
October 1: Arginine VasoPressin deficiency
2024 WAPO Awareness – Arginine VasoPressin deficiency – Diabetes Insipidus

October 8: Cushing’s Disease – 2024 WAPO Awareness – Cushing’s disease

October 15: Adrenal Insufficiency –
2024 WAPO Awareness – Adrenal Insufficiency – Addison’s Disease

October 22 – Acromegaly – 2024 WAPO Awareness – Acromegaly

Kindly share this message to increase awareness among individuals living with pituitary disorders and their families.

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.

 

 

 

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 

Early diagnosis for Acromegaly patients – Research Study

Would you like to help Acromegaly patients get diagnosed earlier to improve their quality of life? We are trying to do just that and invite you to help.

Acromegaly, including gigantism, is caused by a growth in the pituitary gland that results in too much growth hormone being made. This can affect external appearance and internal organs causing early high blood pressure, diabetes, heart disease, and many other problems that shortens and impacts the quality of a person’s life. Currently, Acromegaly takes many years to diagnose.

We will be launching an international research study to determine if we can detect the earliest signs of Acromegaly using the latest computer technology. This study is led by Dr. Michael D. Cusimano, a Neurosurgeon and Professor in Toronto, Canada.

If you or a family member have Acromegaly/gigantism or a pituitary tumour, you can directly help by participating in this study. Please look out for an invitation to this study that will provide more information and a secure online link to participate. In preparation of participating, we encourage you to prepare a collection of pictures of your face and/ or hands and feet, as well as any documents you might have about proof of your condition.

If you’d like to learn more or have questions about taking part in this study, please send an email to the research team at acromegaly-research@smh.ca

Thank you for considering participating in this study!

WAPO webinar on this project by Dr Michael D. Cusimano:
English
Spanish

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: acromegaly

Acromegaly – Lukas’ story (Dutch – French)