2024 Blogs and Vlogs – Hidden aspects of pituitary disorders central to Walk with WAPO campaigns
This year, WAPO created two memorable awareness campaigns to shine a light on the journeys of patients living with rare pituitary disorders. Walk with WAPO for Pituitary Awareness Month, in October, and Walk with WAPO for Acromegaly Awareness Day,on November 1st, both placed patient experiences and the invisible impact of these conditions at the heart of their messages. Through a series of educational infographics and a video featuring people living with acromegaly, we aimed to raise awareness and foster more understanding about the reality of living with pituitary disorders and the invisible symptoms that accompany them.
What is an invisible symptom?
Invisible symptoms are physical, mental, or neurological symptoms that are not immediately visible to others. In the context of a pituitary disorder these most often refer to fatigue, pain, cognitive difficulties, mental health issues, and the effects of hormonal imbalances that are hard for others to observe or to fully understand. Having a condition with invisible symptoms can be lonely and frustrating experience as individuals may be accused of faking or exaggerating their symptoms by healthcare professionals as well as people in their personal or professional life. However, people experiencing invisible symptoms as part of their disease require individualized psychosocial care and accommodations to ensure they can continue participating, to the best of their ability, in school, employment, social, or household activities.They also deserve support and empathy, not judgment and stigmatization.
Walk with WAPO for Pituitary Awareness Month
For Pituitary Awareness month we created four educational infographics, each released at the start of a new week throughout October. They covered the following rare conditions: Arginine VasoPressin (AVP) deficiency (also known as central diabetes insipidus), Cushing’s disease, adrenal insufficiency and acromegaly. The idea of these posters was to walk along the path of a patient’s journey, through their initial symptoms, the diagnostic process, the management, and the long-term impact of each disease. In advance, we also sent out a survey in order to collect quotes from people living with these four diseases so that their voices and needs could be amplified. Invisible symptoms were often mentioned by the survey participants, and included in our infographics for each of the four pituitary conditions.
For AVP deficiency one patient said, “My first symptoms were very frequent and large, nearly colorless urinations and an unquenchable thirst. I urinated over7 liters of urine in 24 hours!” As you can imagine, the constant thirst and need to urinate have a huge impact on a patient’s daily life.
For Cushing’s disease, patients mentioned such things as “uncontrolled thoughts and confusion, brain fog, and insomnia.” Memory loss or concentration problems can be very difficult for patients and equally hard for their loved ones to comprehend.
Adrenal insufficiency patients reported severe fatigue and nausea with one respondent reporting that “it had a huge impact on my life, mostly because of the fatigue.” Having low energy levels and feelings of fatigue limit a patient’s ability to partake in activities they previously enjoyed and they must learn to give themselves time to rest and recover.
Acromegaly patients frequently mentioned headaches, sleep apnea, and joint pain as their presenting symptoms. Chronic pain can be debilitating and have a significant impact on sleep and normal functioning.
It should also be mentioned that many survey respondents mentioned the importance of support groups or patient organizations. One said, “Support groups are a lifesaver. Knowing you’re not alone and can talk things out with others who completely understand what you’ve been through can make you feel validated, let you wallow when needed and lift you up when you’re ready to move on from the low points.”
The infographic posters can be viewed and downloaded here:
- AVP deficiency – 2024 WAPO Awareness – Arginine VasoPressin deficiency – Diabetes Insipidus
- Cushing’s disease – 2024 WAPO Awareness – Cushing’s disease
- Adrenal insufficiency – 2024 WAPO Awareness – Adrenal Insufficiency – Addison’s Disease
- Acromegaly – 2024 WAPO Awareness – Acromegaly
If you would like them translated into your local language, please contact WAPO to see if a translation is already available.
Walk with WAPO for Acromegaly Awareness Day
“The first symptoms and changes I noticed in my health with acromegaly were intense pain, every night, in my hands and feet.”– Mayulabis.
For acromegaly awareness day we interviewed nine patient advocates who replied to a series of questions by video. The resulting compilation video covered topics such as first symptoms, the (often long) path to diagnosis, management and treatment, and the impact of acromegaly on their lives and those of their family.
In this video, many examples of invisible symptoms were brought up. They correspond with the findings of a 2022 study of the psychosocial impact of living with pituitary conditions which reported that the most commonly reported physical and cognitive effects were fatigue, followed by pain and sleep disturbance. Pain and fatigue are subjective, which makes it harder for them to be understood and for them to be taken seriously. This, along with a lack of awareness in the medical community, may be one of the reasons why acromegaly patients can wait 5 to 10 years from symptom onset to receive their diagnosis. Fatigue and pain were mentioned by several participants, such as Donna who said, “If I had to use one word to describe acromegaly, it would probably be exhausting.”
The same 2022 study reported mood swings, anxiety and depression, and poor self-esteem as the most common emotional and behavioral issues experienced by patients with pituitary conditions. Indeed we heard similar stories from the patient advocates interviewed, saying things like, “You get a new personality that does not live up to the standards of the old one,”and “physically, mentally, socially, it changes your world.” The importance of informing caregivers and family members of these possible changes in personality, to prevent important relationships from being damaged, was also mentioned.
Watch the full Acromegaly Awareness Day video here
We need to talk about and manage all types of symptoms
“They never ask. They don’t ask, “How are you?” I felt myself, in the beginning, that the disease was taboo.” – Marie Louise
When patients feel unable to talk about their condition or their symptoms with their family, friends and colleagues, this can have a negative impact on both their mental and physical health. Invisible symptoms can also affect a patient’s ability to work, which can affect their financial security. A study from 2018 explored work disability in patients with pituitary tumor-related disease, and found that the mental and social demands of work were the problems most commonly experienced. Patients may fear talking to their employers about their condition out of fear of repercussions or stigmatization. If they feel misunderstood by their friends and family they may withdraw from social activities and experience feelings of isolation, which can be detrimental to their mental health.
This is why having a support system is so important and sometimes this may mean finding others who are walking the same journey or living with the same disease. As Jeremie described in the video, “The support of the people that surround you such as your family, your friends, and your loved-ones will definitely give significance to your journey in battling with this rare disease” Having a strong support network can help improve a patient’s quality of life.
We hope that the Walk with WAPO campaigns resonate with many people and will contribute to progressing how society perceives and supports individuals with pituitary disorders—whether their symptoms are visible or not.
Please continue to share these WAPO resources over the holiday season and into next year. True change requires open conversations where we listen to others and try to understand their unique needs. Accommodations in schools and workplaces, as well as more awareness amongst healthcare professional and the wider community are also needed. When asked, “What do you wish more people knew about your condition?”, one survey respondent replied, “I would like them to know that living like this is difficult in all aspects of life, and that as a society we can work more with empathy to be able to remove social stigmas.”
If you appreciated this year’s WAPO awareness campaigns or have suggestions for future WAPO initiatives, we would love to have your feedback.
Finally, we would like to once again thank the patients who participated in these campaigns, both those who shared their stories in the video and those who contributed quotes for the posters. We are grateful for your courage and insights and it is your contributions that made the “Walk with WAPO” campaigns such a great success.
Let’s continue to raise awareness for pituitary disorders and inspire change towards a more inclusive and empathetic society for all.
References:
https://hdsunflower.com/uk/insights/post/what-is-a-hidden-disability
