Survey PA

Research help needed: Impact of illness on life of young people

29 Sep, 2017

One of the most common assumptions by health professionals and the general public is that Pernicious Anaemia is mainly found in the elderly. We know, however, that children and young adults are just as susceptible to develop the disease and we also know that it can and does affect the education and social life of young people.

It is good to know that, at last, the way in which Long-Term Health Conditions such as Pernicious Anaemia impact on 16-25 year olds is being looked at by a PhD student from Cambridge University.

Rosanna Fennessy is conducting a survey of young people with long-term conditions and she is keen to know how Pernicious Anaemia affects the lifestyle of those diagnosed with the disease.

If you are 16-25 years old and can spare 15 minutes to complete an anonymous, online survey about your education and support networks, it would be extremely helpful. For more information about the study, the researcher, or to take part:

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  1. Holly Lipscomb

    I wanted to be able to participate in this particular survey greatly. Unfortunately at present I am 40 yrs old. I was not always however. Due to having undiagnosed Pernicious Anaemia I have suffered “significant cognitive change” I was unable to finish college. A hematologist would not diagnose me with PA solely because at the time I was so young, despite 2 general physicians and 2 nuerologists previously diagnosis of PA. In high school I would be so very tires and never feel good. I failed my 11th grade year due to poor attendance. Teachers would say I’m faking migraines and feeling bad to get out of school and school work. Drs and other adults would say I was trying to get attention. Friends thought I thought I was to good for them because I never felt well to do things and go places. Do to being young it went I diagnosed long enough. I now need naps most days. I have entire num spots on my body. I have memories and knowledge I can no longer access. I have trouble talking and saying the correct words. I would have loved to be able to take part in this survey. I was 16-25 once…the effect of this disease in youth causes ripples that cascades into adulthood.

  2. Shelly Lewis

    I am now 43 and was diagnosed with PA when I was in my late 30’s. There was always a tired and numbness in my younger years but I never had insurance even as a child to be diagnosed. I too would like to take the survey but now being in my early 40’s I’m too old. This disease has turned my life upside down. I can’t walk without my legs going numb and I can’t remember anything. I too had to quit college classes for lack of memory. I feel a study should be done for people our age because to me I’m not that old.

  3. Helen Wood

    Completely agree with Shelly and Holly. I wasn’t diagnosed until I was 30 (on my birthday!) and rushed to hospital in a terrible state. I am now 42 and luckily in good health with my ongoing treatment for PA.
    The Doctor who did diagnose me did so with relative ease and couldn’t believe I had struggled with so many symptoms from such a young age. I had only been under his care for a short time after moving house and recently registering with him. When he looked back through the notes from my previous Doctor (who I had been with since birth) he said the indicators had been there from me being around 7/8 years old. I would very much like to comment on this study if at all possible even though I am in my 40’s now……..

  4. Eddie

    I was diagnosed with celiac disease as a baby and was on a gluten free diet mos of my childhood. However, I am not sure how but on applying to join the forces I had blood tests and was found to have PA at the age of 15. I am nearly 62 now and have had regular 3 monthly cytamen (1000) injections. My general health is very good, just a little IBS now and again. I must admit than when I get my shot some times I can feel really energetic. Also, it can be said that a number of times I feel that I need my shot as I do start to get mood swings feel lethargic and too have a bit of brain fog. I notice that the general low ebb feelings are in the colder months but so far have put this down to SAD. The only advice I can give is that the injections do make a difference. Whether my my doctors put all the other variations down to me ” getting old”. Anyway hopefully, keeping up with swimming, running and general activities + my injections will see me through.


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