Acromegaly

EcclesCake | 11:41 Mon 09th Oct 2017 | Body & Soul

18 Answers

Just wondering if anyone on AB has first hand knowledge of this condition be it as a sufferer or relative of one.

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Hair Loss (Thinning)

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Sqad

I am neither a sufferer or a relative of one, but i know a little about the disorder.
Do I qualify?

EcclesCake

Question Author

I'm wondering how it affects the day to day life of the individual and if there are secondary conditions that go hand in hand with it.

My Dr Google search is factual but doesn't really delve into the practical aspects of the condition.

Thank you Sqad.

Sqad

Ah! OK Eccles.......I cannot give you the points that you are looking for......the practical aspect.
My guess would be coping with life, with large hands an feet, finding shoes and clothes to fit.....a bed big enough to sleep in and a partner in life.
The other way i suppose, is to accept, like many do to a chronic illness is to say "***" it and just get on with life.

If however it is untreated or resistant to treatment, then one would have to deal with the complications, that of diabetes and high blood pressure.
Sorry.....but that is my lot and it is not a common condition so getting someone on AB with practical answers may be difficult.

EcclesCake

Question Author

I wasn't really expecting a room full of arms going up, and squeals of me, me, me! I realise it is a rare condition and the likelihood of finding someone with first hand knowledge was as likely as finding a unicorn egg in the garden.

However, thank you for your input.

Sqad

Now.........that I can help you with.....

https://www.google.es/search?q=unicorn+eggs+for+sale&;tbm=isch&source=iu&pf=m&ictx=1&fir=zuKAYZHWFTHLZM%253A%252Ct_SpqcGrRbibTM%252C_&usg=__An30P75ZWLxk8KGqcvltEtfkZyE%3D&sa=X&ved=0ahUKEwisyIjgvuPWAhXMOhQKHeF7A2sQ9QEILDAB#imgrc=zuKAYZHWFTHLZM:

EcclesCake

Question Author

:-)

NoMercy

Sqad, do you know if this is connected to Marfan Syndrome, because my friend has both.

He had a lung transplant a few years back and popped an AAA during the procedure, which was also attributed to the Marfan Syndrome.

Sqad

NoM ....not my area of expertise, but i know of no association between Marfan's and Acromegaly.
HOWEVER, in the early days it may be difficult to differentiate as they are BOTH tall and lanky. However, with Marfan's they tend to stop growing and Acromegaly they just go on and on.

Sqad

P.S There is an association between Marfan.s and AAs.

NoMercy

Its an endocrine disorder though, yes?

Buenchico

This might be of interest to you, EC:
https://www.pituitary.org.uk/media/310580/Acromeg-A5_16-10-15v2.pdf

Sqad

NoM.
No, Marfan's is not an endocrine disorder, it is a connective tissue genetic disorder.
Acromegaly IS an endocrine disorder in that is't effects are due to excessive secretion of growth hormone ( commonly due to a pituitary tumour)

Peter Pedant

yeah we had one in my year at uni
he just took his regular bromergocryptine and got on with his life
obviously he had to buy big clothes

NoM - Marfan and acromegaly shouldnbt be related
marfan is Fibrillin 1 ( Chr 15) and Acromegaly doesnt have a genetic componest in adults that I can identify - but certainly not Chr 15.
ergo unrelated.
acromegaly can be genetic ( childhood onset) but you are talking about rare associations of a rare disease

Peter Pedant

oh we also had a marfan in my year - really tall and sparse habitus.
Diagnosed by lens dislocation in a teenager ( slam dunk apparently)
... didnt qualify