Redefining Normal

Glenn and his father and mother in 2005 in Canterbury, U.K.

“My late mum two years before her passing with the naughty sense of cheeky humour we all loved.”

Allan and Glenn in Amalfi, Italy 2 years before Allan’s passing.

Glenn and Allan in Umbria, Italy a week before his passing.

Growing up I assumed I was “normal.” I assumed my entire family was “normal.” For 36 years, I was not aware of Loeys-Dietz syndrome or that I was at risk from this genetic condition. In my school years, I suffered with severe allergies, asthma, and was diagnosed with a deviated septum after a spate of headaches at middle school.
Born in Telford in 1975, in Shropshire, England, I was the middle of three children.

All of my family excelled at school with great grades. The three children all went on to University.
We all loved sport in my family in our youth, and my father played football until he was 50. 
My late mother Susan was great at sport at school as well. She was 6 feet tall, my younger brother, Allan, was 6 feet 5 inches, and I was 6 feet 2 inches.
Allan towered above all the children in his age group. Opposition players and coaches appeared to think he was much older and often questioned his age.  He was a great swimmer, and he played goalkeeper for school and local junior sides. 
I was also a footballer, swimmer, and a track + field athlete. I competed for the Telford’s athletic club whilst at school and competed in county athletic meets. My best discipline was sprinting, but also excellent at long and high jump.
My older sister Claire too excelled at sport, though she, unlike my brother, mother, and I, does not carry an LDS gene.
At the age of 15, I tore my left knee ligaments in an innocuous fall whilst playing football. I then spent 12 months recovering after surgery. Then, on my first week back in pre-season football training the following year, I seriously damaged my left knee again. This time it was damage to its cartilage which meant another 12 months (including further surgery) and physiotherapy. My surgeon advised me I shouldn’t play my beloved football again. But I did play for another two years. Between the ages of 16 and 18, I was playing football at the weekend and then would be in immense pain for a couple of days afterward. I didn’t want to listen to the doctor. I thought I was “normal” and that I could find a way to continue.
Then in 2010, our world as a family was completely blown apart by a genetic condition I had never heard of until 50% of my mother’s genetic family were all diagnosed with LDS3 / SMAD3 in 2012. 
We were only diagnosed because of my amazing mum’s (aged 58) sudden death in April 2010. This was immediately followed by my beautiful little brother’s (aged 32) sudden death in October 2010. This was after Allan was exercising at a gym on a Friday night after work. We had all chatted after the alarm of my mum’s death, discussing exercising more to improve our fitness. 
A week before Allan’s death, my father, Allan and I travelled to Umbria on what should have been my parents’ wedding anniversary. It was pre-booked, and as a family, we thought it would be great to visit a destination that my parents had fallen in love with. I could not believe how well Allan looked. He had lost weight and looked younger. We had a wonderful week together, which meant his passing the next weekend was a severe shock.

My sister was staying with me in London for the weekend when one morning we received a call that no one wants. My brother had passed away at Telford’s hospital. On Friday night whilst exercising, he felt a pain in his chest and walked into the local emergency room. Not one of the emergency doctors considered an aneurysm despite our family history. They assumed he might be having a heart attack and therefore tested his EKG, which was normal, but then prescribed him aspirin as a caution. The hospital had Allan booked in for a CT scan on the following Tuesday. Sadly, on Sunday, he was found dead in his hospital bed.
This is a call no one wants to receive -their younger 32-year-old brother passing whilst in hospital. He had been told they thought he should be discharged on the Sunday too. That was the last we had heard on the Saturday. Seeing my sister drop to the floor in my home is a moment that will live with me forever. Truly awful and heartbreaking 
I could not have gotten through any of this without the support of my soulmate Mike. He is now my husband and has known me longer as an LDS survivor than the person that came before the diagnosis. 
Both my mother and Allan passed from a dissected main ascending aorta arch aneurysm. Immediately after my brother’s death and at the request of the coronet, I discovered that I had an extremely dangerously large aorta arch aneurysm and needed immediate replacement arch and heart valve surgery. It then took 18 months to hear back that we had the gene mutation SMAD3 following genetic testing for which connective tissue disorder it could be. This was a time of extreme grief, depression, and sadness. It felt like our family had been completely blown apart. On top of my own surgery and recovery, I suffered survivor’s guilt for my younger brother, Allan.
I decided, though, that LDS and my surgery wouldn’t define me. I continued working at a fast pace in central London for a media company. However, 3 years later, aged 39, I suffered a small stroke shortly before I was due to marry Mike. This was likely caused because I was working far too hard and not managing my anticoagulation sufficiently. Luckily, I rehabilitated well, to within 95% of my original self.

This wake-up call made me re-evaluate my life and future. I quit my job as an executive director, which I previously thought was my dream life. Perspective was now needed. I was suffering with grief still. I was depressed, and through this, I was also diagnosed Bipolar 2. In fact, at one orthopedic appointment, I was advised that it was the energy of my bipolar that disguised the pain and degradation of my bones and joints.
So, I slowed down, and I now fully appreciate all of life and the smaller things much more than I ever could have previously imagined when I thought I was artificially happy. I’m now far happier than I ever was despite the daily pain, discomfort and continual worsening of my physical structure. 
I still grieve my mum and best friend and brother every day. But I’ve become resilient to the grief and find ways to celebrate these two amazing humans every day. On key anniversaries I celebrate the people that gave me life, even though I miss both so deeply every single day.
I no longer plan for the next five to ten years. I no longer challenge myself like I used to. I now plan one vacation a year. I discovered mindfulness before it became a major global activity. I really appreciate the small things in life every day - my dog, quality time with my amazing, loving husband who has supported me financially with care, friendship, and of course, my family and friends. I especially appreciate my new LDS warrior friends I’ve discovered through social media globally on LDS Foundation and other national and global support groups. With these groups and the people who love and support me, I can still feel “normal.”

-Glenn Price