Freephone helpline: 0800 917 8495      
Chris's Story

Chris's Story

Hi my name is Chris and I would like to share my story about how I got my diagnosis and how I'm dealing with it for the rest of my life.

When I was a child I noticed that I bruised very easily, low pain tolerance and if I got a cut it wouldn't heal right. I don't have enough scar tissue and it's very thin. I remember being teased as a kid for being " different". I have always been skinny and didn’t have the energy to keep up with my peers.

When I was 19 I experienced my first spontaneous pneumothorax and spent a week in hospital. The only answer they had was because I'm a "skinny white male". The following 9 years I kept having the same problems and in 2018 I had a major collapse of the lung. The x-ray showed my right lung had collapsed 80% and they rushed to get a chest drain in. They tried to do a blood test and the vein blew out straight away. Three days later the registrar suggested that I get a procedure called pleurodesis via video assisted thoracoscopic talc pleurodesis.

2 weeks later I'm out of hospital and then a week at home with a chest tube valve and then went back and got it removed. fast forward 2 and a half years. I'm just let with a bit of neuropathic nerve damage in my chest but my lungs nicely glued to my chest wall lining from the talcum powder and scar tissue bond.

In April 2019 I ended up in hospital with suspected appendicitis and a CT revealed right renal artery dissection with multiple infarcts involving approx 1/3rd of the right kidney. The vascular service wanted to see me regarding the possibility of systemic vasculitis. They just assumed this was consistent with fibromuscular dysplasia. They noted I had high blood pressure so they put me on aspirin and enalapril to keep my blood pressure down.

I saw the kidney specialist (nephrologist) and she suggested a kidney test every year. The next specialist I saw was the cardiologist who put a holter monitor on me for 24 hours, everything was normal except an extra heartbeat which I get when I bend over sometimes. He then referred me to genetics who did a test, everything showed Marfan syndrome except my hearts normal. I did a blood test that day and had to wait till after our "covid lockdown" in June to see my geneticist for my results. 

The day my life changed forever.

I wasn't really shocked at first but the geneticist was firm about how serious this is and that's when it started to sink in. The last 4 or so months since the diagnosis I have stopped all heavy lifting and strenuous tasks. I left my job as we couldn't find a full time role with my restrictions. My partners family have been exceptionally supportive which has been great having someone to talk to when i'm feeling down about life.

Now I’ve realised how rare this disorder is, I want some more support and awareness for this in New Zealand. Everyone deserves the chance for medical care whether emergency or just monitoring.

The other issue I have is a genetic defect with the KRIT1 gene which can cause vascular issues in the brain and spinal cord which I’m awaiting to see my vascular surgeon to monitor this as there's a few issues, i.e.. no blood flow in the left vertebral artery which is common but has to be checked out for my VEDS possible problems that can happen.

I've discovered that there are so many friendly people out there that have the diagnosis and can empathise the reaction to getting the diagnosis. To stay positive I listen to a lot of music and play on the xbox and also a few chores and most importantly enjoy the more family time I have now.

Yes the future is uncertain,
Yes we have lower expiry dates than most people,
BUT
Yes you can reach out to people in the EDS social media scene,
Yes you can enjoy every day even if it's a little bit at a time.

Thanks for reading my story and I wish you all the best.   

Chris Scott-Palmer
New Zealand
Share by: