Misdiagnosed as hypochondriac!

By Dee, United Kingdom, January 8, 2015

Hi there, my name is Dee and I live in Somerset, UK. For as far back as I can remember I have been ill in one way or another - mostly constant infections requiring antibiotic treatment in large and constant doses. I was always ill. Not critically, but enough for people to start to believe and comment that I was a hypochondriac.
Following a period a couple of years ago when I received 13 lots of antibiotics in less than 6 months, routine bloods showed a deficiency in neutrophils - the white blood cells that contribute to infection fighting. Further investigations were made and eventually I was diagnosed with a condition called Idiopathic Neutropenia. Idiopathic means 'cause unknown'. Further investigations are continuing to find out the cause and it appears (though is still unconfirmed) that its likely an autoimmune problem that is 'killing off' the neutrophils.
After a bit of a battle in the UK, I was eventually allowed to try the drug GCSF which stimulates bone marrow to produce neutrophils, so for me, this artificially elevates them to a higher level than I need, and then the killer (whatever it is) comes in and just reduces them to a reasonable level. For me, this drug has changed my life - I do of course get infections, but nowhere near the number I used to have. My quality of life is generally much better. Of course there is still the ongoing battle now to find out the why's and wherefore's of this and we may never know.
I have obtained medical records for the past 15-20 years which have shown that my levels have always been low - which accounts for all of the infections that I was unable to fight - but also has shown that in all these years of suffering, no-one has bothered to investigate why I was so ill, so frequently, or bothered to tell me there might be a problem.
I am not alone in this - facebook has been a wonderful tool to find other sufferers worldwide with neutropenias' however all of us in the UK who have joined forces to provide a support group for each other continue to experience frustrations with diagnosis, treatment and problems. Neutropenia is frequently misdiagnosed, misunderstood and brushed off as not very serious - it is and can be life threatening! Our aim as a group is to raise awareness of the condition in the UK both to the general public and to the medical profession and to raise money to go towards a cure hopefully. If you have neutropenia or know someone who has, and wish to join the facebook group, please search for UK Neutropenia Support Group.

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
X

Share your story




(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.