Stories of those impacted by Acromegaly.

If you have experienced the changes brought on by Acromegaly, know that there is hope to returning back to a semblance of your old self through surgery, medication and / or radiation. The following patients have shared their photo stories to show - there is hope!

Jill / Medically Controlled

The photo on the left was taken pre-diagnosis. The right, is post surgery, medically controlled, taken 12 years later.

Irene / Acro Girl

Time settles into the past, I look upon myself and realise that's not me, I am the present of the woman I am now. Surgery changed me for the better, someone I like. Not the Acromegaly girl, the one I didn't know. Alis volat propriis "She flies with her own wings".

Bella / Still changing...

Left photo was taken in March 2016, less than 1 month after diagnosis. Right photo was taken in June 2016, one month post surgery. 2 years later, I am still seeing changes with each month that my IGF-1 is controlled. 

Jim / Things really do get better!

The first photo (L) was taken July 5, 2015 minutes before surgery before having a 25+/-mm tumor removed. The second is on February 19, 2018. Things really do get better once you figure out what is going on!

Christi / The Good

Christi has been medically controlled on Somatuline since 08/2014. The first photo (L) was taken Jan 2014, just a month and a half before surgery. The photo on the right was taken 2-1/2 years later.

Rochelle / Unstoppable

So much has changed for Rochelle since her surgery! Weight loss, appearance, and energy levels! She is unstoppable! Rochelle had surgery in September 2010 and has been in remission since. 

Nitish / A New Person

3 months Post operation, Nitish says he certainly feels like a whole new person. 

Carole / Medically Controlled

Elise Marie is medically controlled on 90mg of Somatuline every 6 weeks. The picture on the left was taken before surgery in November 2016 when the doctors removed a 14mm tumor. The second picture was taken July 2017. 

Traci / Moving Forward

The picture on the left was taken in 2007, prior to Traci's diagnosis. The picture on the right shows Traci as she looks today. Traci has been medically managed since 2009.

Christine / Facebook Memories

The photo on the left popped up in Christine's Facebook memories from 4 years ago. It was 3 weeks before she found out she had a pituitary tumor. It’s a memory she’d like to forget but it reminds her of how far she's come with surgery and medication to treat this ugly condition

Di Ana / Awareness is Power

"Awareness is having the power in your hands to make a change for others through the voice you share of your journey. I still have to take many pauses but I have been able to push through and create joy, normalcy and life into my everyday with treatment. I remind myself that "I am" the boss of me, not this."

Elizabeth / The New "Me"

Elizabeth doesn't recognize her pre-surgery self. She had surgery on January 6, 2011, but post op has been a bit of a challenge. Elizabeth is currently medically controlled with Cabergoline.

Melissa / In Remission

Melissa's surgery was September 7, 2016. Her tumor was successfully removed and she currently not taking any medicine. 

Rocio / In Remission

Left: before the diagnosis.

Right: 5 years post surgery. Currently in remission, no trace of tumor and controlled with Sandostatin 20 mg C / 28 days

Bea / Living Life!

"After diagnosis and surgery, I find that I care much more about myself, what I eat, physical activity and therapy. I am currently very healthy and have a great quality of life!"

Romina

"With treatment, life can be better for patients."

Kristin / Meeting the Endo

"Meeting my endocrinologist was the best thing that could have ever happened to me - having this surgery to remove this tumor. Left picture are the day of surgery 2/28/17. Right picture was taken post-surgery, October 8, 2017. Many symptoms were relieved within weeks of surgery- swollen hands, feet and limbs went down, soft tissue on face inflammation decreased, hand numbness stopped. "

Jenifer / Light at the end of the dark tunnel

Photo to the left was taken 2010, prior to diagnosis. Right was 2018. 2 surgeries and 6 weeks radiation, 8 years later....tumor free!!!! There is light at the end of a dark tunnel

Brenda / I'm a survivor!

Diagnosis 2015 Had surgery, Gamma Knife Radiation and still medically controlled with Somatuline Depot 2 1/2 yrs and things are still changing. Labs are getting in normal range . Good days are great and bad ones are the days from hell. I am a survivor!

Traci / Post-Op Changes

Bottom left was 5 years ago, bottom right was last June five weeks after diagnosis (3 weeks prior to apoplexy), top right was the day after surgery, and top left was yesterday post op day 12.

Nina / Biochemical Remission since 2015

"Top (left to right): Age 19; 2nd photo is the day of my 1st surgery in 2009 I was 25 years old; 3rd photo is me 2 weeks after first surgery; 4th is 14 months after 1st surgery and the day of my 2nd surgery. Bottom (left to right): Late 2011 at age 27; 2nd is after a months worth of Image Guided Radiation Therapy (IGRT) in July 2012 age 28; 3rd picture is the day I graduated chiropractic school in 2016 at age 32; Last photo is from October 2016 after starting my radiology residency program. The stand alone picture is from a week ago, June 2018, aged 34. "

Kami / Medication-free

2006 before diagnosis. 2010 before first surgery. 2018 after second surgery.Currently on no medications for IGF.

Gretel/ Better but not cured (yet)

"I have been diagnosed in the fall of 2015 and got surgery as a first step in my treatment. Unfortunately, some active cells seem to have remained and keep on producing too much GH. With Somatuline and Somavert we seem to fight them quite well... for most of the time. As of 2003, after my first child, I had the impression things went downhill with lots of "inconveniences". In 2005 I started to notice my nose changing. Throughout 2010 - 2013 I continued to "blow up". In 2014 I started to have serious and unexplainable health problems up to the moment I was no longer able to walk or function in the summer of 2015. Nowadays, I look at life a bit differently, taking good care of myself, enjoying it as much as I can."

Acromegaly does not define us. We do not let our diagnosis hold us back from living a full and enriched life. Some have found passion, purpose, and inspiration through their diagnosis. These people bring inspiration, and we call this our "Faces of Hope".

Say hello.