Life with acromegaly

Quite simply it has its ups and its downs but doesn’t life in general?

It’s been quite a while since i last posted an update to my blog and its been playing on my mind so apologies for the silence.

Living with acromegaly or saying that with any chronic health condition clearly has its implications but for me right now updating my blog everything is fine. I’m just getting on with things, living my life and making the most out of every opportunity to be happy.

A few recent highlights from my life with acromegaly bulleted out of pure laziness :)

  • This last few months my acromegaly has become more active and IGF1 level is slightly elevated so as before my pituitary gland tumour remains active. The condition is being treated chemically every three weeks by 30mg sandostatin injections. Other than some personal complications i am A-ok.
  • This last twelve months i have carried on with my running and raised nearly £900 for Cancer Research UK. I’ve run the Rome Marathon, Manchester Marathon, Liverpool Marathon, Oulton Park Half Marathon and the Great North Run Half Marathon in Newcastle. I’ve recently cut back on my miles and other than my ballot entry for the London Marathon 2016 it’s very much time to pull back a bit.
  • I have been undergoing ongoing orthodontic works with braces to straighten my teeth prior to a planned bi-lateral osteotomy. I have braces on both sets of teeth and the surgery to correct the asymmetric cross-bite or underbite is still pending. Was due to happen this month but things weren’t quite ready and i think surgery may well be early 2016.
  • I have just started back at university to finish the final year of my degree and i literally can not wait to get this degree. It signifies a lot to me. The degree and acromegaly are intertwined! Getting to university has been the best thing i have ever done and i owe the suggestion of getting myself to uni to a special person. Thanks Amy. Oh i’m off to the Amazon Rainforest in January 2016 too (i hope).
  • Alongside uni and running i’m still working part time for two Ecology firms doing wildlife surveys and hoping to have a position secured for when i finish uni or even whilst i go on to post grad study which may be an option.

So all in all everything is good, i am living with acromegaly and if you are a sufferer or a family member of someone please note “you can live with acromegaly.”

Saying that the emotional impact of living with this condition and your emotional well being is i believe equally if not more important than the clinical management of this disease. That’s just my opinion and i can talk all day about it.

If you are suffering or worried about living with this condition (and where possible) i’m happy to support people where i can. I am thankful for the support that i get from both my family and the NHS locally at GP level and from my extended family and friends at The Christie with whom i do not think i would be where i am today.

Acromegaly has had a massive impact on my life but with support you can move on with it and live a good life. Bringing my update to a close I today found this flyer on the Novartis website #adayinmyshoes #lifewithacromegaly need i say anything else?

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