Kara LaFrance shares her journey with acromegaly - carrying on the fight

Up next in our Digital Disease Spotlight:
​Kara LaFrance is an avid artist, graphic designer and rare disease advocate for acromegaly. Kara talks to RARE Revolution about her own journey with the largely misunderstood disease and how a series of misdiagnosis, dismissals and different treatments lead her to eventually being diagnosed with acromegaly and another diagnosis of small fiber neuropathy.

​Even through all the pain and challenges Kara does not let her diagnosis stop her from living her best life. Here she inspires others with her story to remind you to never give up on having your voice heard and that you can’t forget to live your life even when you are fighting for it to be recognised.

Kara LaFrance

I am not new to telling my story – I started with blog interviews circa 2009 while talking about my handmade cards. What’s a graphic designer, artist and rare disease patient supposed to do!  For me, I must create. 

See some of Kara's creations from this year below: the spirituality of the bee, peaches, the fig tree

​But I’ll back up a bit. When I was twenty I had my first migraine. It was at the back of my head. The sinus infection that seemingly caused it went away but the migraine never did.

After graduating with a BA in graphic design I moved to Boston. Migraines and neck pain plagued me daily. I was diagnosed with PCOS (this proved incorrect) and insulin resistance. It needs to be known that these symptoms and others under metabolic syndrome are often precursors to acromegaly. Until the medical community starts testing for acromegaly when a patient continues to feel unwell and not responding to medications it’s time for some extensive blood work and a contrast MRI.

​However, in the past twenty four years not much has changed. From the age of twenty two to twenty seven I was told that there was nothing wrong, my pain was caused by depression. That statement still causes anger to rise. 

​But I have a good sense of humor… It was 'all in my head'

When I was twenty seven, after seeing a plethora of doctors and having been officially “retired” for two years, I found a Godsend. A doctor, who on the first visit knew I had a pituitary tumour. I had never heard of a pituitary tumour, by the third visit he had the proof. 

In 2005 I was diagnosed with a prolactinoma. In 2007 it was re-diagnosed as a dual secreting tumour. The growth hormone (GH) presented itself. In April 2007 I had transsphenoidal pituitary surgery. Although they removed all of the tumour my numbers did not return to normal. This led to five years of injections three times a day. ​

​Oddly, on January 1st, 2012 I had one of the worst migraines of my life. It did not let up for nine months. Three months in, it was time for a GH check (igf1). For the first time in five years the medication was not holding the growth hormone at bay.

 The dose was raised twice. It did not work. By the summer of 2012, having never been pregnant, I was asked to consider radiation. I agreed. For six weeks I went for targeted pituitary radiation. It’s an average of eight to ten years to know if radiation worked. After radiation I began the once a month injections which can be hard on your gallbladder.

The first month's injection was available but I desperately wanted to have children so it was not an option.. a child was not to be

​In May of 2018 I experienced  a hellish infection, gallbladder removal, hospital stay and home recovery. Thankfully, I no longer needed the injection. Radiation had worked in six years instead of the average eight to ten!

I cannot forget to add that although I don’t look like I have acromegaly to most, my jaw and tongue did grow out and to the right. In December 2017 I had my jaw broken and I spent four years in braces. The perfect surgeon put acromegaly as the number one reason for surgery. This is key. I realised years ago that I constantly bit my tongue on the right side and this was pushing my teeth outward. In October of 2018 I had RF ablation of my tongue. In essence, they electrocuted my tongue to cause shrinkage. This needed to be repeated but last year was a rough year, so I thought, then COVID19 halted everything.

​It’s been two years since my husband and I relocated back north from North Carolina. In New York, I had to start over. I am technically in “remission” but late diagnosis opens the door for more illness. Acromegaly patients are all very different. For me my constant is pain. This pain moves which is not normal, so most doctors do not believe me. I’ve been dismissed by many specialists but I have found a few trying to help. 

Last year I received a new diagnosis. Small Fiber Neuropathy (SFN).

​Ah-ha! This is why my pain moves.

I was diagnosed with a thigh and ankle skin biopsy. The facts cannot be disputed. But other odd symptoms, itchy legs, neuropathic itchy legs to be more precise… This feels like insanity.

He looked at me funny. I thought, oh-no another disbeliver

My third of four neurologists last year was a sleep specialist. He looked at me funny. I thought, oh-no another disbeliever. But he waited, listened and came back with SFN caused restless leg syndrome. My sleep has been a major issue for so long but I do not have typical RLS. More often than not I fall into the lower percentages of everything. ​

​The skin on my legs was a mess and I was so itchy! A dermatologist went above and beyond to figure out what could help calm an itch that wasn’t really there. The neurologist, well she was fired. Don't be afraid to disagree and part ways with a doctor. 

The diagnosis of Small Fiber Neuropathy lead to IV ketamine infusion treatments. This helps. But I realised that a massage before- hand and afterward made it ten times more beneficial. My pain management specialist at Memorial Sloan Kettering Cancer Center in New York City has stated it a different way, he said that the Ketamine was helping the massage not the other way around.

I have had the worst year either ever or comparable to the worst year due to coronavirus shut downs. My alternative therapies were removed and ketamine alone gives me a day of rest and about three days of relief. 

​I have new areas of pain that are paralysing. I have never been in so much distress through all of this. Late diagnosis is cruel.

​The shutdown has devastated me, possibly for life. My pain management doctor is not sure if I can ever get back to where I was… which was not very good in the first place. Time to start searching for autoimmune diseases again. I continue to fight on.

Why? Why is this my life? I do not know. But I am tenacious. I will never lose hope. I have faith. I choose to fight

​I am technically in “remission” from acromegaly but I am fighting for the movement I am losing. I am fighting for quality-of-life. I am fighting for all those with late diagnosis and all the diseases, syndromes and symptoms this causes.

I advocate. I speak the truth. It starts with knowing the word acromegaly and being able to pronounce it. Know that it is a pituitary tumour producing excess growth hormone. Know that even though you search and find only images of giants this is not what we look like. That is the late diagnosis. It is a gross misrepresentation and causes the “doctor check list” to not include Metabolic Syndrome. Researchers have much work to do but it is not prioritised. I know there is a “pre-acromegaly” diagnosis but it must be found and documented. I was sick for ten years with a tumour, not one outward sign of growth but inside is a different story. Why is research not being done?

It starts with knowing the word acromegaly and being able to pronounce it. Know that it is a pituitary tumor producing excess growth hormone. Know that even though you search and find only images of giants this is not what we look like.​​

My surgeon in 2007 told me it is not “cancer“ but make no mistake it is a cancer — it affects every system of your body. He added I would have to fight for the respect a patient with a cancer diagnosis receives. 12 years later that is still my undeniable truth. ​

I share my story hoping people will not feel alone. That they will not stop fighting for their best life and through it all don’t forget to live

My life is my husband and my art and advocating.
​ I am rare. I will be heard.

Kara LaFrance

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​​For Support and to find out more about acromegaly from our Digital Disease Spotlight campaign you can read and listen to Dan Jeffries story to find out how he was inspired to create something positive from his diagnosis. Kara LaFrance tells us how not giving up is the only option when it comes to her personal battle with acromegaly. We also speak with Dr Niki Karavitaki, Senior Clinical Lecturer in Endocrinology and Honorary Consultant Endocrinologist at the Queen Elizabeth Hospital Birmingham where she co-leads the Pituitary Service and Pituitary Multi-Disciplinary team (MDT) to gain her insights and perspective of the rare condition.

You can also read Our RARE Book review by David Rose, Loving large: A Mother’s Rare Disease Memoir is an insight into one rare disease family’s diagnostic odyssey. This book follows the journey of Patti Hall and her son with a rare form of acromegaly, called gigantism. Living life with a rare disease is complicated and getting the diagnosis is only a small part of that journey, if anything, it’s just the start.

Dan's Story

Understanding Acromegaly

Support

Dan's Voice

Book Review

Dr Niki Karavitaki