New Clinical Trial: ORAL ocreotide!

https://clinicaltrials.gov/ct2/show/NCT03252353

#LifeWithAcromegaly

This isn’t about me. It is about an orphan disease which chose me to tell its story. When I was first diagnosed with Acromegaly in 2011, all I needed was information (hopefully in Indian context). I did find a lot of information on the web but none closer home. Now, thanks to this wonderful article by my former colleague and friend @sangeetha.devi published in the #TheHindu today, there will always be an Indian context. So, go ahead, share it with the world. One know never knows – there might be someone looking for that one glimmer home on a bad day with acromegaly or any other rare condition. A big thank you to my family and friends for supporting me in my journey. With you all around, I am not alone in my universe. #LifeWIthAcromegaly #MyStory #HyderabadRunners #fitness @pituitaryorg

A photo posted by Chetan Mallik (@writealign) on Dec 7, 2016 at 7:24pm PST

Bravo, Chetan Mallik!

There's an article going around in the Acromegaly Community Facebook Group that really inspires me and echoes so many of the sentiments I've come to realize over the past decade with Acromegaly.

The article is a profile of a man named Chetan Malik who was diagnosed about 5 years ago by a chance meeting with a doctor who recognized his symptoms. Since then, he chooses to remain positive, upbeat, and active in his life with acromegaly! Bravo, Chetan Mallik! I hope I may have the opportunity to meet him one day!

Follow Chetan on...
Twitter: https://twitter.com/writealign
Instagram: https://www.instagram.com/writealign/

For our Dutch Speaking Friends

Acromegaly Conference and New Blogger!

Hello Dearest Acro friends!

This past weekend was an amazing experience - it was the Acromegaly Community conference! I have only attended one of these before (in 2011) and this year's conference was every bit as transformational as the first one. There were over 50 acromegaly patients from across the country and globe! Some notable locations I recall: Alaska, Australia, England, and Canada! In addition to the patients, many loved ones and supporters were there, and they even had their own Acromegaly Loved Ones breakout group led by Karen S. (mother of Tanya Angus) and Tina V. (godmother of Tanya Angus). I am definitely bringing my spouse to the next conference!

I cannot emphasize enough the benefit of attending an in-person conference like this! I left the conference feeling invigorated, informed, and even more committed to maintaining my health and advocating for better awareness and treatment of acromegaly.

As I sat in the presentation by Garni Barkhoudarian, MD-Neurosurgery, I remember wondering how my life might have been different had I had access to all the information and knowledge he was sharing before my own surgery. Later during the conference, I had the pleasure of meeting Bella, a newly diagnosed acro patient who is awaiting her scheduled surgery. Well, lucky for Bella, she was not only getting comprehensive information about pituitary surgery before her operation, she is going into surgery knowing that she is not alone and there is a whole family of acromegaly patients supporting her! I'm so happy that I had a chance to sit and talk with Bella during and after the conference. She has an amazing upbeat attitude, and I just learned via the Acromegaly Facebook Group that she is blogging her acromegaly journey! Check it out! She already has several posts up even though she just started it this month!

http://bellasbeanstalk.blogspot.com/

Reading her journey reminds me of my own experience with diagnosis and surgery, now over 10 years ago! I remember how writing on a blog not only helped my loved ones understand what I was going through, but it also helped me sort out my inner thoughts and feelings. Make sure to go over to Bella's blog, read her story, and leave her supportive comments! 

Acromegaly makes NYTimes THINK LIKE A DOCTOR column

Finally! One of the reasons I write this blog is because I want to raise awareness of acromegaly within the general public.  One of me dreams was to have acromegaly featured as one of the mystery diagnoses on the TV show House. There is a monthly column in the NY Times called Think Like a Doctor that is a real life version of the fictional plot of House- a patient presents mysterious symptoms that are difficult to diagnose, and after lots of trial and error, the cause of the patient's symptoms are finally uncovered.

Well guess what! Last week acromegaly finally made it! Here's the presentation of the mystery and the (spoiler alert, a little late I guess) long and winding process to diagnosis of acromegaly.

The diagnosis article asks, "How do we miss this disease?" I'll tell you: fat shaming. I attend an in-person acromegaly support group, and one thing I've heard from multiple acromegaly (and Cushings!) patients is that their diagnosis was delayed by years because their doctors saw that they were overweight, and then dismissed all their symptoms as a result of being overweight. "Go loose weight. You're fine." Weight already comes with so much judgement and assumptions in our society (people are "fat" because they are lazy, greedy, no self control, etc etc.), and here the overweight patient is blamed when really there is a dangerous underlying medical condition that needs to be addressed.

I hope that this article will help people realize that there are medical reasons for weight gain, and we should be more compassionate towards those who are overweight (including ourselves if that's the case!) because you never know what is going on with a person.

Thanks Carolyn from acromegaly.care for pointing the article out to me!

"I had a bubble on my brain"

I was walking around yesterday and saw an ad in a bus stop that said, "I had a bubble on my brain and they took it out through my nose. Now I can go back to school."

I've been there! (Taking out "the bubble" through my nose part, at least. I was out of school by then.) So it turns out little Nile's tumor was not quite a pituitary tumor, but the surgery was the same. Can you imagine how tiny and delicate the passageway for the operation must have been.

I sent a photo of the bus stop ad to someone I had met just the day before- I was at my friend's niece's birthday party, and my friend's sister was like, "Hey you and this guy should talk, I think you had the same thing, your pituitary operation?" Turns out he had a pituitary tumor removed just three weeks ago, and wanted to know what the rest of his recovery would be like.  The doctors don't think his tumor was actively secreting any hormones (more test results pending), so he doesn't have acromegaly but we still had that kindred experience of getting diagnosed, facing surgery, surgery, and recovery.  It was strange to recall a time that was almost a whole decade ago! I was such a different person, so much has happened since then, and I hadn't even talked about my experience in detail in a while.  It was great to hear the similarities in our stories (for example we were both diagnosed because of vision symptoms, peripheral vision loss) and it also felt good to represent long-term recovery to him - like, "Yes, you will have a (semi) normal life again! I am proof!" He's my new "Brain Bubble Buddy!"

Pre-surgery: So Calm!

Post by Brian Temple Smith.

I'm super impressed by how this guy manages to be so casual about his diagnosis and scheduled surgery, and I love the way he is spreading awareness of the disease among his friends!