Acromegaly - Philippines

04/02/2025

We are welcoming RARE month with the theme of National Rare Disease Week Philippines and Rare Disease Day 2025

On February 22-28, the country will be observing the 16th National Week with the theme, “𝑴𝒐𝒓𝒆 𝒕𝒉𝒂𝒏 𝒀𝒐𝒖 𝒄𝒂𝒏 𝑰𝒎𝒂𝒈𝒊𝒏𝒆.”

Around the globe, there are more than 300 million people living with a rare disease and approximately 6000 types of rare conditions. By sharing their stories, promoting awareness, and supporting their cause, we uplift the rare disease community – a community that is diverse but united in purpose.

Together, we can bring awareness to diseases, stories, and communities beyond what we can imagine.

Tell us what you imagine for the Filipino rare disease community in the comment section.



Department of Health (Philippines)
National Council on Disability Affairs
Philippine Society for Orphan Disorders Incorporated
Institute of Human Genetics - NIH University of the Philippines Manila
Volunteer Youth Leaders for Health - Philippines

29/01/2025

I just want to share my rare disease story today! I used to be a theater actor and a performer on stage. My first role as an actor was a “dwarf” on a fantasy play way back 2017 and just this year 8 years after I was given a role for a fantasy play but this time it was a giant. I portrayed the character of “Dillon” a “God of Faith.

Instead of crying and laughing about how big I am right now, I see it in a positive way. Nothing changes aside from my physical appearance. It is still me, the same as who I am a few years back prior my Acromegaly diagnosis. I can still do things that I love, I still do things that make me happy. Most of the people that I am having conversations with don’t recognize that I am diagnosed with a rare condition, unless I open up with them about it. I usually don’t bring up acromegaly. It is because I don’t want them to see my illness, I want them to see the things that I am capable of doing.

I want them to see that even Acromegaly patients are also just like normal people. That’s what I always told my fellow Acromegaly patients here in our country, the Philippines. In fact, these past few months before the year ended, I received some news that my IGF-1 is getting higher despite taking Cabergoline. It was higher than before, but I guess our journey as an Acromegaly patient is like a rollercoaster. I still think positively-, I just go with the flow, and I just live my life as it was before my diagnosis. I hope and pray for a better health in the upcoming years!

Source: Patient Worthy

Link for the article:

https://patientworthy.com/2025/01/22/jeremie-soriano-from-dwarf-to-giant/

28/01/2025

30 DAYS LEFT!

Acromegaly - Philippines supports the global celebration of rare diseases! February 28, 2025 will be the Rare Disease Day for this year!

Did you know why it is celebrated on the last day of February every year? It is because among the twelve months, it is the only month which consists of 28 or 29 days. It means that February is "RARE."

There are thousands of rare diseases in this world and Acromegaly is one of them. Let us all celebrate this unique and rare opportunity to unite with our goal and purpose. To spread awareness and be an advocate of rare diseases. Let us all bridge the gap that separates us from one another. Rare is unique, rare is beautiful, and we care for RARE! Together we can do it! 💪

23/01/2025

https://patientworthy.com/2025/01/21/jeremie-soriano-an-acromegaly-story/

I was diagnosed in 2021. It all started when I was hospitalized for about 3 weeks due to high blood glucose – Hyperglycemia. During my stay in the hospital, my doctor found a small lump in my pituitary gland which he referred to as Adenoma. It was confirmed by an MRI after I was discharged from th...

06/12/2024

"Disability doesn't always need visibility."

Not all disabilities are seen, kaya let's be kind.

30/11/2024

Acromegaly - Philippines would like to thank the Asia Pacific Alliance for Rare Diseases (APARDO) in collaboration with the Philippine Society for Orphan Disorders (PSOD) for the opportunity to attend the APARDO Conference 2024 held at Dusit Thani Manila, Philippines last November 23-24, 2024.

We are always grateful for patient collaborations and discussions that will create an impact to the lives of our patients. We will continue to be an inspiration for other people, especially to those who are touched by rare diseases like Acromegaly. We must end discrimination, bridge the gaps, and promote for a harmonious society for all!

On behalf of Acromegaly - Philippines headed by Mr. Jeremie Soriano, thank you so much APARDO and PSOD for this fruitful and meaningful event. As we are always saying, 'Disability does not need visibility.' Acromegaly is a type of 'rare disease' under RA 10747 or the Rare Diseases Act of the Philippines.

24/11/2024

Acromegaly - Philippines participates in the Asia Pacific Alliance of Rare Disease Organizations Conference held at Dusit Thani Hotel, Makati, Philippines.

Let us continue to be an advocate of the rare diseases and become the voice of the voiceless. Together we are stronger! 💪

23/11/2024

23/11/2024

KAPWA: Connecting Lives, Sharing Hopes and Inspiration

Last night, the Philippine Society for Orphan Disorders together with the Institute of Human Genetics - NIH and Volunteer Youth Leaders for Health - Philippines organized a fellowship night, as an opportunity for patient support groups, to connect and share experiences with each other.

The activity is a side-event of the Asia Pacific Alliance of Rare Disease Organizations (APARDO) conference hosted by the Philippines.

22/11/2024

22/11/2024

PHL to host Asia Pacific Conference on Rare Disease

MANILA - Rare disease leaders and advocates from across the Asia Pacific will be gathering for the annual conference of the Asia Pacific Alliance of Rare Disease Organizations (APARDO) on November 22-24, 2024. The annual conference aims to be a platform for leaders and advocates to share best practices and promote collaboration toward a common strategy and its translation to action.

This year, the two-day conference will be headlined by Dr. Teodoro Herbosa, Secretary of the Department of Health (Philippines), who will talk about advancing rare disease as a key priority in universal health coverage in the Philippines.

Read more on the PSOD website through the link in the comments section.

19/11/2024

Acromegaly - Philippines is thrilled and honored to announce that we will be participating in the Asia Pacific Alliance of Rare Disease Organizations (APARDO) Annual Conference that will be held on November 22 - 24 in Dusit Thani Hotel, Makati, Manila, Philippines.

Our organization will be sending two representatives for the said event. We are grateful for these opportunities to contribute and make changes in the Rare Disease Community. See you there!

31/10/2024

“Walk with WAPO though the experiences of people living with acromegaly”.

To know more about Acromegaly, we are celebrating today the "World Acromegaly Awareness Day" November 1st. 🌏 Please watch and share the video below to know more about this rare condition. 🫂

People living with Acromegaly share their journey and experiences

22/10/2024

It’s time to reveal the fourth and final poster from the "Walk with WAPO" series for Pituitary Awareness Month...🥁

Today we will be learning about Acromegaly! 🫶

Acromegaly is a rare disorder caused by an excessive production of growth hormone, most often resulting from a growth hormone-secreting pituitary adenoma (benign tumor of the pituitary gland). 📈

Symptoms include:

🔵 Headaches

🔵 Enlarged hands and feet (rings no longer fitting 💍, increase in shoe size 👟 )

🔵 Joint pain, carpel tunnel syndrome

🔵 Snoring, sleep apnea

🔵 Weight gain

🔵 Deepening of voice

🔵 Frontal bossing

🔵 Enlarged jaw and tongue, teeth spacing

🔵 Loss of libido, fertility issues

🔵 Excessive sweating

🔵 Swelling of facial features

🔵 Thickened, oily skin

What else should you know about acromegaly? 🤔

🗣️ As one patient advocate said, “I wish all people realized that for me and many others it is a chronic disease with many comorbidities.”

This condition comes with invisible disabilities and visible changes to the body that should be considered.

😔 It is also associated with various comorbidities such as high blood pressure, diabetes mellitus and arthritis, which can impact a patient’s quality of life and life expectancy.

🩺 There is an urgent need for early disease recognition in the medical community and general public to avoid poor long-term outcomes. The earlier the diagnosis the better!

Finally, Acromegaly Awareness Day is November 1st, which is next week. 📅

Please help raise awareness for acromegaly: like, save and share this post! 🫶

💻 To view and download the full poster for acromegaly, find it on the WAPO website here: https://www.wapo.org/pituitary-disorders/acromegaly/

That is the end of our Walk with WAPO series! We hoped you like it and that you learned something new. 🤓

We thank the patient advocates who provided their personal quotes for our series, as listening to those with lived experience is the best way to learn and improve outcomes for others. 💖

Please continue to share information and raise awareness for all pituitary disorders. If you want to learn more about acromegaly or any other pituitary conditions, take a look at the information on the WAPO website here: https://www.wapo.org/pituitary-disorders/

15/10/2024

It’s the third week of Pituitary Awareness Month! 📅

This week, please walk with WAPO and learn about Adrenal Insufficiency! 🚶

👉 Adrenal insufficiency (AI) is an endocrine disease where there is a lack of cortisol production from the adrenal glands.

This can be caused by adrenal failure (primary AI), diseases affecting the pituitary gland (secondary AI) or problems with the hypothalamic-pituitary adrenal (HPA) axis due to prolonged use of glucocorticoids (tertiary AI).

Symptoms include:
🔵 Headaches
🔵 Nausea or vomiting
🔵 Dizziness that may lead to fainting
🔵 Abdominal pain and diarrhea
🔵 Craving for salty foods
🔵 Joint or muscle pain and weakness
🔵 Chronic fatigue
🔵 Loss of appetite leading to weight loss
🔵 Irritability, confusion or depression
🔵 Irregular or absent menstrual periods
🔵 Low libido

What else should you know?

💉Treatment involves hormone replacement therapy. People living with this condition also need a “stress” dose of hydrocortisone in times of extreme stress, sickness or injury in order to prevent an adrenal crisis, which is a medical emergency.

Acute illness, without appropriate stress dosing, can lead to an adrenal crisis (🚨emergency situation🚨)! Patients must always carry an emergency hydrocortisone injection kit.

👨⚕️ Early diagnosis by healthcare professionals is crucial in order to avoid a life-threatening adrenal crisis.

Adrenal insufficiency is a chronic disease and long-term glucocorticoid replacement therapy comes with its own set of side effects and comorbidities that must be addressed.

And finally, patients suffer from invisible disabilities such as chronic fatigue which can have a big impact on their daily life.

Please help raise awareness for adrenal insufficiency by liking, saving and sharing this post so that it reaches the most people possible! 🫶

To view the full poster for adrenal insufficiency, find it on the WAPO website here:https://www.wapo.org/wp-content/uploads/2024/09/2024-WAPO-Awareness-Adrenal-Insufficiency-Addisons-Disease.pdf

Next week we will cover the last pituitary disorder of this series…which will be on Acromegaly! 😊

10/10/2024

Pituitary Awareness Month continues! This week, walk with WAPO as we learn about Cushing’s disease! 🚶‍♀️

Cushing’s syndrome is an endocrine disorder characterized by the overproduction of cortisol. This can be caused by either excess ACTH from the pituitary gland due to pituitary tumor (Cushing’s disease) or independent over-production of cortisol from a tumor on the adrenal glands (Cushing’s syndrome). In rare cases, an ACTH producing tumor is found in other parts of the body such as the lung (ectopic Cushing’s syndrome)

🚨 Symptoms include:

· Red, puffy and round face (moon face)
· Weight gain around chest and tummy
· Increased fatty tissue on back of neck and above clavicles
· Depression, anxiety, brain fog
· High blood pressure
· Pre-diabetes, diabetes
· Easy bruising and purple stretch marks on skin
· Osteoporosis
· Muscle weakness and thin arms and legs
· Increased risk for infections and blood clots
· Low libido
· Menstrual irregularities

What else should you know?

🏥 Surgical removal of the tumor (pituitary or adrenal), medical therapies and/or radiation therapy are all possible treatment options for this condition.

👩‍⚕️ Although Cushing’s disease may be controlled after treatment, comorbidities such as cardiovascular disease, osteoporosis, risk of blood clots and lung infections, psychological disorders and cognitive decline may remain and need to be addressed.

⌛ Recovery of normal hormone balance after surgery takes time and recurrence of the tumor is possible, which can be a source of worry to people living with this condition.

Early screening and diagnosis is essential to reduce long-term comorbidities!

Finally, the most important message comes from this patient advocate: "I wish people knew that struggling with Cushing’s is an incredibly hard and painful journey - not just physically but mentally.”

Please help others learn and raise awareness for this rare disease: like, save and share this post so that it reaches the most people possible! 🫶

And to view the full poster for Cushing’s disease, find it on the WAPO website here: https://www.wapo.org/awareness-for-pituitary-diseases-in-october/

01/10/2024

The month of October is considered as the "Pituitary Awareness Month." Did you know that there are a lot of pituitary disorders out there and one of them is Acromegaly.

Today, we will focus on one of these pituitary disorders which is Arginine Vasopressin Deficiency (AVD) or Central Diabetes Insipidus.

Most patients who underwent surgery such as transsphenoidal excision of tumor experiences AVD or Diabetes Insipidus as a result of the surgery. It causes excessive thirst and frequent urination among patients. It can also be experienced by Acromegaly patients too.

Desmopressin is one of the medications that treats AVD or Diabetes Insipidus. This type of condition may not be visible to others but it really has a negative effect on our lifestyle and at some point, disability

Below is a poster to raise awareness for AVD or Central Diabetes Insipidus. Be aware and observant, you might have some of these symptoms but you just don't recognize it. Always prioritize your health over all matters!

Caption By: Acromegaly - Philippines
Poster By: WAPO

30/08/2024