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 PNH Patient Experiences in their Own Words 

"My learning curve to understanding PNH began slightly prior to 2004. During Primary School I developed far more bruises then expected (to the surprise of both my parents!) This was assumed to be, not due to the continuing activities that would be expected of a young boy but, as any protective parent would think, bullying.


After this, I visited a paediatrician in 2004 for a diagnosis and understanding of what could be happening to me. This was the stage at which I was told I had ITP (idiopathic thrombocytopenic pupura). This condition has symptons similar to PNH but unfortunately this was a misdiagnosis. The diagnosis of PNH took a further 5 years of being pushed from specialist to specialist, location to location. In 2009, the diagnosis was concluded to be Hypoplastic Anaemia and a small PNH clone.

From the point of being diagnosed I felt that I was living in a shadow of doubt; I hadn't met or heard much about any others who shared the PNH condition. Reading online resources (especially healthcare related websites in the States) hadn't inspired much learning and development of my understanding of the ultra-rare PNH blood condition. After meeting other people with PNH I no longer felt alone, it was an eye opener to listen to other humans who had been down a similar path with the diagnosis of their condition and symptoms. It was inspiring to me to realise others had more trouble with their diagnosis and also to hear how healthcare differed in different regions and internationally in regard to diagnosis, on-going support and care compared with my simple routine six monthly check-up.

The PNH National Service team has facilitated a path on which I hope we can continue with a community of those with PNH. This would include by learning more from others stories and progression both with and without Eculizumab (Soliris).  Hopefully more attention will be brought to the condition and its symptoms so that it can alleviate some of the unknown (which can be such a shock) when trying to explain complicated terms such as PNH 'granulocyte clone' to friends and family - something I’ve found out too often when trying to explain what I actually have."

 

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"Although the diagnosis journey is usually a long and daunting experience; I was actually diagnosed within two months. I felt my symptoms appeared gradually but also suddenly. I noticed I was extremely tired and had severe bruising with led me to the GP to get a blood test. After a bone marrow test it was confirmed I had PNH/Aplastic Anaemia. It was amazing how quickly my consultant thought to test for this however, it is also concerning that because it is such a rare disease, many doctors I have met are confused or unwilling to learn about it.


Throughout my journey, I felt really exhausted, lethargic and had pain with overall body/leg heaviness along with my muscles feeling achy. This is a horrible feeling because I can no longer keep up with my family and friends’ pace of life, particularly at university. So I feel that dealing with life is twice as hard both physically and mentally as I usually want to stay in bed all day. It can be hard because people don't understand how hard it is to travel and get the motivation to do daily tasks when you are so tired. I also miss being able to participate in the dancing celebrations for my favourite festival Navaratri; as I just cannot generate the energy.

However, starting Soliris has managed to balance my haemoglobin blood levels and prevent the risk of clotting which is encouraging. Overall, I love the support and care I get from the Kings College Hospital team, and appreciate their dedication into the research and service for PNH patients".

 

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“I've had a PNH clone, for which I am on Soliris, since being diagnosed with Aplastic Anaemia in 2007. I've found it isolating to have a rare condition that people don't understand, and frustrating to feel I’m always justifying why I can't do things someone my age shouldn't think twice about....I've lost count of the times I've had someone say "so you just get tired?" as if having a quick nap would solve it. It makes me want to scream! There are good days where I forget I have PNH and bad days, where just getting out of bed is like dragging my body through mud. I'm currently at a crossroads in my treatment plan and hoping for the turning point that will give me back my quality of life, fingers crossed!


Quotes from Patients Living with PNH

“Frustrated that I can’t do what I want”

“I have to negotiate so much as I can’t do what others expect”

“I am demotivated and put things off a lot!”

“I don’t like asking others to make allowances”

“It feels like a constant battle”

“It makes me feel quite depressed”

“I feel guilty quite a lot”

“I live life at a different pace to everyone around me”

“I can’t tell if I am tired due to PNH or just life!”

“I feel envious of other people who aren’t drained like me”

“It makes me feel quite lonely and isolated”

“I find concentrating hard and often fall asleep in the chair”

 

 


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