Lauren shares how her Muscular Dystrophy UK alert card helped her enormously when she was admitted to hospital. The medical professionals had little understanding of how Lauren’s spinal muscular atrophy affected the treatment she needed. Only when she gave them her alert card that explained the condition and protocol to follow with a respiratory infection, did she start receiving the care she needed. Now she’s encouraging others to get an alert card.
“My alert card was invaluable when I was in hospital with pneumonia”
When you become seriously ill and have to go to hospital, you just expect the medical professionals to know how to help you. But when I was admitted with pneumonia and respiratory failure, they had no idea how my muscle wasting condition affected the treatment I should have been given. I can’t bear to think about what would have happened if I didn’t have my medical alert card from Muscular Dystrophy UK.
I have Spinal Muscular Atrophy (SMA) type two but don’t require any home breathing equipment and I haven’t been in hospital since I was a child. This winter has been awful for illnesses though, and I got a chest infection that I just couldn’t shift.
Two weeks into the virus, I was getting worse, not better. I called 111 and saw an out-of-hours GP, who gave me stronger antibiotics and an inhaler. But things went downhill fast that night; I was struggling to stay awake and my oxygen saturation (SATs) dropped to the 60s, so we drove to A&E.
One size treatment doesn’t fit all
The doctors put me on oxygen right away and left me for hours without monitoring. At the time, I had no idea that I wasn’t supposed to be on oxygen. No one had ever told me. I just assumed, “I have pneumonia, I can’t breathe, oxygen will help.” But I later found out that oxygen on its own, without BIPAP (non-invasive ventilation), is extremely dangerous for people with SMA and could have led to the respiratory failure I was later diagnosed with.
What made it worse was that I felt like no one was listening. I had been battling this infection for two weeks, and I knew my body. But it didn’t seem to matter what I said.
“They weren’t taking me seriously. That’s when I decided to hand over my alert card.”
Everything changed after that. They were able to read the detailed yet to the point information quickly and started understanding my condition more and how to treat me. It was frustrating that it took a piece of paper for them to listen, but at least it worked.
Once I was admitted, I needed cough assist regularly. Since I didn’t have my own machine, the physios at the hospital would bring one in throughout the day. But at night I had to rely on an on-call physio, which wasn’t ideal. The whole experience just showed me how much of a gap there is in understanding conditions like mine.
Reflecting on my hospital experience
After getting out of the hospital, I started reading about the dangers of oxygen therapy for people with muscle wasting conditions. It hit me that I could have been in serious danger without even knowing it. No one was checking my blood gases or monitoring if my CO2 levels were rising. If I had been on the oxygen much longer, my health could have plummeted, and they wouldn’t have known until it was too late.
“That’s why alert cards are invaluable. They’re not just helpful, they’re essential. When you’re exhausted and struggling to explain your condition for the tenth time, handing over an alert card can make all the difference.”
Mine includes emergency contact details for my specialist medical team, along with crucial information, like the fact that I should never be put on oxygen again. I’ve even highlighted that section inside the card so it doesn’t get overlooked.
The whole experience has left me shaken. I realised how unaware so many medical professionals are when it comes to conditions like mine. And that’s scary. Things could have ended very differently.
So, if you have a muscle wasting condition, order your alert card. It could save your life.
