NEWSLETTER
september 2023 newsletter
Month: February 2024
october 2023 newsletter
march monthly peer support meeting
EVENTS
march monthly peer support meeting
March 5, 2024
Join us as we share and connect about our pheo para journey in a monthly meeting led by patients just like you. Everyone will have an opportunity to introduce themselves and share.
This is an online meeting conducted via Zoom, where we can see and hear each other. Please note that all participants must introduce themselves to the group at the beginning of the meeting through either video or voice.
Our March 5th meeting begins promptly at 4:30 PM Pacific/7:30 PM Eastern.
metastatic survey results
LATEST NEWS
metastatic survey results
provided by the Advocacy Committee
In late 2023, Pheo Para Alliance launched a survey to gather information to develop a strategy to best support metastatic patients following the announcement regarding the cease of production of Azedra, the only FDA approved treatment for metastatic and unresectable pheochromocytoma and paraganglioma in late 2023. Fifty three clinicians from twenty-eight centers participated globally.
This survey was created as part of the Advocacy Committee.
meet us in dc for rare disease week on capitol hill
LATEST NEWS, EVENTS
meet us in dc for rare disease week on capitol hill
Mr. Phearless Returns to Washington!
February 25 – March 1, 2024
Join Pheo Para Alliance in Washington, DC during the week of February 25th when we’ll meet up with other rare disease advocates to talk to our legislators about issues facing our community! This year’s event is an especially important one for those with pheo para: our metastatic patients no longer have access to a therapy approved by the FDA for the treatment of pheo para, and we’re hoping to work with our legislators to keep other therapies accessible and as affordable as possible.
WHO?
You, your family members, friends and other allies in your fight against pheo para!
WHAT
Attend the Rare Disease Week meetings with members of Congress from your state to discuss how they can help patients with metastatic pheo para
WHEN
Week of February 25th, 2024
WHERE
Capitol Hill, Washington, DC
WHY
The only FDA-approved treatment for pheo para was discontinued by its manufacturer late last year. As a result, patients with metastatic disease are encountering insurance denials and other barriers to care.
HOW?
Contact Aimee Powell for information on how to register, meet us and pick up your materials.
saif’s story
As an individual with Pheochromocytoma and Paraganglioma, I share my personal journey of resilience and gratitude, highlighting the value of a positive mindset and an appreciation for life’s simple moments. My story aims to inspire others who also struggle with the same illness, exploring the innate human desire for survival and progress while highlighting the growth and fulfillment that can result from overcoming personal struggles. By being proactive about one’s own healthcare, open communication, and advocacy, we can become advocates for our own wellbeing. Through personal reflection and perseverance, I hope to encourage readers to embrace life’s journey, maintain a positive attitude, and never give up hope, no matter how tough the road may seem.
Summer of 2006, I began experiencing severe headaches that persisted day and night for two weeks. Concerned, I visited a clinic where they discovered that my blood pressure was high. The doctor suggested monitoring my blood pressure for a few days and upon my return, prescribed medication to manage it. However, he also advised me to see a specialist for further investigation.
During my visit to the specialist, I underwent a CT scan. The specialist called in a consultant and seemed both happy-first time to see those tumors – and worried about what they had found. They informed me that I had tumors on both of my adrenal glands, which came as a shock to me. Unfortunately, they didn’t have many details at that time and urged me to be admitted to the hospital immediately for further tests.
I spent a long time in the hospital, and during that time, I underwent surgery. When I woke up, I found myself in the ICU, unable to speak or move, with various tubes and lines attached to me. The experience was overwhelming, and the sound of the monitors still haunts me to this day. I spent a total of 23 days (about 3 and a half weeks) in the ICU. After my time in the ICU, I returned home but struggled with low blood pressure for two weeks. I had to go back to the doctors, who prescribed me another medication to help raise my blood pressure.
Throughout this journey, I realized that the doctors I encountered didn’t have much experience dealing with my condition, which added to the challenges I faced. My life took a complete 180-degree turn since then. My goals and dreams seemed to fade away, and I no longer felt as strong as I once did.
A year later, I requested a neck scan, which revealed tumors on my bilateral carotid arteries, separate from the adrenal tumors. Both surgeries to remove these tumors required me to stay in the ICU. In one instance, I woke up to find my lips on the side of my face, and in another, my mom was screaming as I remained unconscious due to severe bleeding from my artery, necessitating a return to the operating room.
Genetic testing revealed that I have an SDHD mutation, and the scans confirmed the presence of pheochromocytoma and multi-focal paraganglioma. Unfortunately, the doctors informed me that there is still ongoing research and limited treatment options available for these tumors. I discovered para testicular tumors and inguinal regions on my own since they were not revealed in my scans. I sought medical assistance to have them surgically removed. However, there are still more tumors present on my chest and abdominal that were mentioned in the latest scan. And they are growing rapidly which made doctors labeled its metastatic para, I have chosen not to undergo surgery for the tumors in my chest and abdomen due to the high risk involved, and I am optimistic that alternative treatments will offer better outcomes.
I have always believed that one’s attitude and approach to life can make all the difference in the world, I refuse to be a victim of my illness and instead choose to face each day with courage and determination, it is not always easy, and there have been times when I have felt overwhelmed and discouraged, but I have never lost sight of my goals or given up on my dreams. My journey has taught me the importance of resilience and the power of a positive mindset. I have learned to relish every moment of my life, even the difficult ones, because they have made me who I am today. I am grateful for every challenge that has come my way because they have given me the opportunity to grow and become a stronger person.”
Does Saif’s story resonate with and inspire you? Why not share your own?
www.pheopara.org/tellyourstory
jazmyns-story
“I exhibited symptoms for the better part of six years, but it was always passed off as anxiety or stress.”
Special thanks to Jazmyn and her mom for sharing their SDHB paraganglioma journey, and to INCA for creating this video as part of their broader effort to raise awareness about neuroendocrine cancer.
