MEN2a and an Organisation

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I was discovered to have MEN2a (c634) in 2000 after surviving a rather large and active phaeochromocytoma.  Subsequently I was offered genetic testing and was then diagnosed with medullary thyroid cancer - my thyroid was removed.  My son (then 2) and my mother were also diagnosed via genetic testing.  My son had a prophylactic thyroidectomy aged 3 1/2 and is now a healthy 17-year old.  Since those early days, my mother underwent bilateral adrenalectomies, I lost my remaining adrenal gland (all due to phaeochromocytomas), and I had a shoulder replacement to remove a medullary thyroid cancer metastasis from the top of my arm bone.  Being steroid-dependent has not stopped me from living my life, including trekking 120km through the Sahara Desert and travelling around the world.  Surviving to this point has made me a stronger person and I try hard to be a strong role model for both my children (one with and one without the disease) to show that you can achieve and survive against the odds.  Of course, not every day is perfect, but learning to listen to your body is an essential part of learning to live with a life-long disorder like MEN.

In 2002 I got involved with a fledgling organisation called the MEN Society which quickly evolved into the Association for Multiple Endocrine Neoplasia Disorders (AMEND).  I now run this registered charity (no. 1153890) full time - a job I love.  Over the years we have worked hard to provide information resources and support services to families affected by MEN1, MEN2a and MEN2b, as well as adrenocortical cancer and other sporadic endocrine tumours.  AMEND offers free information resources, free information events, free pscyhological counselling and a whole host of other useful resources and services.  www.amend.org.uk