After being dismissed countless times by doctors, Mark Knoop came across a Facebook page he says saved his life after getting his much-needed diagnosis which stopped his suicidal thoughts
Mark Knoop has always suffered with asthma but then he noticed he started getting reactions to alcohol. Mark, from South London, noticed his asthma worsening if he was stressed, which then turned into severe sinus infections and a constant blocked nose.
It was a hard time for Mark, he was experiencing dark thoughts, a break-up from his long-term partner and also losing his job. The 47-year-old hit an all-time low due to his health and had nowhere else to turn, until he came across a group on Facebook, where he found people suffering with the same type of symptoms.
It also affected his sleep and put him in a constant vicious cycle of struggling with his symptoms and lack of sleep. He had visited his GP on countless occasions and was simply told it was asthma.
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‘I can’t cope anymore like this’
“I was about 40 [when] I started noticing that I was getting these weird symptoms, especially in response to alcohol. But I had this tingling all the time. I just felt awful and I was getting lots of sinus infections,” he told Daily Mirror. “I spoke to the doctor about it… [they] gave me a standard nose spray to treat my nasal symptoms,” he continued.
But the sprays didn’t have “any effect” according to the dad. Mark had a stressful job and two children, so he said going back and forth to the doctor was tricky. He ended up demanding an appointment with an ENT (Ear, Nose and Throat) specialist.
After this consultation with a specialist, he was told he had nasal polyps and needed an operation to remove them. He said the operation “massively helped” but knew they would just come back again eventually.
He explained: “It was amazing just feeling better, because I was really worried I was going to feel like that for the rest of my life. I was feeling like I can’t cope anymore like this.”
‘Facebook group saved my life’
Mark was feeling happy about a breakthrough but not fully convinced that the issue was resolved. He took matters into his own hands and started self-medicating, which desensitised him to aspirin which has helped his symptoms.
The dad-of-two then started Googling his symptoms again, which led him to discover a Facebook page for a condition called AERD (Aspirin-exacerbated respiratory disease), which is also called Samter’s.
“I thought I was going mad because I was suffering so much,” he confessed. “I really can’t understate how much that Facebook group saved my life.”
He was getting to a point where he was so unwell. He felt as if no one was taking him seriously which sadly led to suicidal thoughts, his partner leaving him and it contributed to why he lost his job.
He added: “[The Facebook group] gave me the magic search terms to find out what I was experiencing. That was a turning point for me. [It] really made a huge difference and then helped give me the confidence to assert myself with regards to the medical professionals.”
“There are so many people with this condition that are experiencing exactly the same lack of understanding from medical professionals,” he told The Mirror. “But people can go on the group, find out all the information and then go back and tell the doctors, which is what I ended up doing.”
He found out from the group about a new asthma medication which he managed to get on prescription from his GP and managed to get an allergy test for aspirin. He said: “When I had the test, it was really important to me that I had a diagnosis that confirmed that I had this because it was having such an impact.
“The name and the way it’s described means some doctors just think it means you’re allergic to aspirin and if you don’t take aspirin you’re okay – but it’s not it at all. It’s way more complicated and way more debilitating than that,” he added.
“The operation helped at least in the short term and the new asthma medication helps. But it was really taking the aspirin that makes me normal most of the time.”
Symptoms of AERD
The three main symptoms of AERD are asthma, repetitive nasal polyps that often come back, and problems with taking some medications. These often include aspirin and nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and naproxen.
Symptoms usually start suddenly and can be serious. These may include trouble breathing, which could be an asthma flare-up, wheezing, coughing, sneezing, and a stuffy or runny nose. Some people with AERD also have these types of problems if they drink alcohol, such as beer or wine.
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While it still remains unclear what causes AERD, the disease is not caused by taking aspirin or other medications, but AERD sinus or asthma symptoms get worse when taking medicines. Usually, warning signs of AERD don’t show up until people have reached their 30s or 40s, but AERD can sometimes happen in children.
After speaking to other AERD patients, Mark then had the knowledge he needed to go back to ENT specialist and is now being treated accordingly. It’s helped change the quality of his life. He can now spend quality time with his children and is launching his own tech company thanks to his health getting better.
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