Tell us about your journey to diagnosis?
My specialists feel I was born with Neutropenia but my Bone Marrow Biopsy was fine? For many years I remember always being unwell and having tummy virus after tummy virus and fevers and spending a lot of time off school. I was weak and very thin as a child. All of this kept getting put to me picking up virus after virus…..no one thought to do blood work. So even as a child I thought I must be very unlucky to keep picking up virus after virus? At age 21yrs I became very very ill and was taken to hospital and after bloods being run they found I had Cyclic Neutropenia. By this time I was married with one child. I went on to manage the Cyclic Neutropenia very well cause I knew when my levels were low ( I could just tell and I would even tell the nurse taking my blood test at what level it would be!) I was right often. So other than mouth and nose sores I managed quite well. BUT in 2006 again I became very unwell and at this point my neutrophils dropped to chronic level so they sit around 0.6 or 0.4 mostly. Normal range in Australia is 2.0—8.0 so my levels are bad and over the years I have had fevers lasting a week and infections of one kind or another that have made me very unwell.
Tell us how you currently manage your neutropenia: meds, bloodwork, things you do to enhance your general well-being i.e. extra rest, diet, exercise.
To stay well I take very good care of myself , avoid sick people, use hand sanitizer all the time when out and about in public, eat well. Avoid foods that have high bacteria like seafood etc. I sleep 8 hours a night as the body needs rest to repair I feel. I try to just enjoy things and a friend I have who battles a different problem told me one day “take the small joys of life and exaggerate them”…..so I do. I enjoy simple things in big ways like eating expensive chocolates really slow or sipping herbal teas to enjoy the flavours or really tasting the bouquet of a fine wine. I enjoy everything I do.
Tell how you are doing now. Is your neutropenia well managed, do you experience fatigue, pain or other symptoms related to your neutropenia?
So to date at June 2019 I remain well despite those nasty mouth ulsers that you cannot escape. I brought an electronic ear thermometer to keep an eye on my temp when I get unwell at night and I head to hospital once it gets too high. I carry hand sanitizer everywhere and use it after touching handles on doors or shopping trolleys or any place that is public that would have a lot of germs. I carry a handkie always during winter and if I am in a crowd with people coughing I put it over my nose/mouth until I can remove myself from the area. I remain reasonably well but things can change very quickly I find. Keeping on top of mouth problems is a big thing so find a good dentist.
How do you explain your SCN to others i.e. employers, school officials, friends, family? Are they supportive and understanding?
Most people are understanding but as most people with Chronic Neutropenia don’t look sick ( we are not purple with spots all over us!) some people don’t get it and its cruel but making someone feel that they have to prove how sick they are as our condition is somewhat invisible can be very unfair……”It’s cruel to make a person with an invisible illness prove how sick they are”…..I read that comment on the net and thought that’s so true! A few times I have just drawn this on a bit of paper 0.4 (Normal range 2.0—8.0) that tends to shut people up pretty quick as numbers like that are the proof that we are sick but still needing to prove that is not fair but sadly not everyone is kind and understanding.
Tell how the diagnosis of neutropenia has changed your life. What challenges you have overcome? What have you learned in your journey with neutropenia? Any advice you might have for those who may read your story?
So I have just learnt to live with it although its not easy. I enjoy everything I do. I have two beautiful daughters. I feel blessed. I enjoy the moments I’m well and just ride thru the bad times when I am not well. I read this every night before bed as it helps me to stay strong and face my health condition head on.
“GOD grant me the serenity
to accept the things I
courage to change the
things I can, and the
wisdom to know the difference……
So I live, love and laugh……..and take GCSF injections for infections as needed. May this story of mine give you hope to believe you can live with this condition. And just use hand sanitizer for the rest………………all the best.