Wednesday, May 4, 2016

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!



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! 

Tuesday, April 12, 2016

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!

Tuesday, September 30, 2014

"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!"


Monday, September 29, 2014

Pre-surgery: So Calm!

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!

Monday, April 14, 2014

New Blogger: Dicky Moo!

This post has been saved as draft for way too long, I was meaning to post this in June of last year! 

Richard had pituitary surgery in November of 2012, and you can read all about it at dickymoo.com!

If you know of other acromegaly blogs out there, please leave a note in the comments so we can collect them all!

Monday, March 24, 2014

FEELING PRETTY


OMG I've been DREAMING of this for so long, and now it actually exists! I've always admired Kevyn Aucoin's philosophy, life, and work, and I knew about his struggle with acromegaly.  Now his company is partnering with Novartis to help women with Acromegaly (and Cushings) to feel better about their appearance, which I know first hand is a big part of dealing with this disease.

"INTRODUCING… THE HIGHLIGHTS PROJECT ACROMEGALY MAKEUP TUTORIAL!

The Highlights Project provides tools to those living with Cushing’s disease and acromegaly to help them redefine beauty and change their perspective about the way they look.

Those living with acromegaly often experience physical symptoms that change their outward appearance. Some of the most common symptoms include: enlarged facial features like the forehead and jaw, enlarged hands and feet, coarse skin and excessive sweating. These symptoms can make those with the condition self-conscious. However, there are several ways you can use the art of makeup to help you take back control of your appearance and feel beautiful!  Watch this video to see how Shannon, an acromegaly patient, learns to use some everyday makeup tips to boost her confidence! Afterwards, try these tips out yourself and you will be well on your way to looking and feeling your best!"

http://highlightsproject.com/