Pituitary support group to be relaunched

For most people diagnosed with pituitary disorders, their condition is initially something of a mystery. Symptoms develop over time and may go unnoticed for a number of years.

Helping to unravel the medical mysteries are specialist nurses Sondra Gorick and Kathy Powell, whose work in the Clinical Investigation Unit at NNUH is key to diagnosing and monitoring pituitary disorders.

Now Sondra and Kathy are re-launching a local support group for pituitary patients sponsored by the Pituitary Foundation, a national charity, and helped by Tony Denton, a volunteer at NNUH who is also a patient.

“The pituitary is like the conductor of the orchestra – it controls all the other glands in the body such as the thyroid, adrenal glands, ovaries and testes,” Sondra explains.

“A large part of our work is to reassure patients who suffer symptoms that can be extremely distressing. For instance, acromegaly is a rare condition that affects the growth hormones, causing the patients’ features to grow out of all proportion. Once the hormones are controlled, either with drugs or surgery, the appearance can return to normal.

“It’s thought that Goliath had this condition – in the bible story he was a giant and David was able to sneak up on him because in acromegaly the peripheral vision is also affected.”

Another condition is Cushing’s Disease, which is a tumour of the pituitary which makes the adrenal glands produce too much natural steroids. This is a very distressing condition because the patients put on large amounts of weight particularly around their middles. They get very weak muscles, bruise very easily, often develop diabetes and high blood pressure and several other problems.

Most tumours on the pituitary turn out to be benign and some may not require any treatment at all. However, tests and treatments have improved a great deal in recent years and patients can now look forward to longer, healthier lives with much greater control of their symptoms.”

The first meeting of the relaunched support group for pituitary patients will take place 16th September in Benjamin Gooch Hall within the Teaching Centre at NNUH, from 7 pm. It’s hoped that the group will meet on a three-monthly basis.

Sondra – who was recently nominated for a “Patient Choice” award in the 2009 Norfolk and Norwich University Hospital Staff Awards – is pledging her support for the Pituitary Foundation by holding a sponsored “green hair day” at NNUH on her 50th birthday, 24 November.

If you would like to know more about the Norwich pituitary support group, call Sondra Gorick or Kathy Powell on 01603 286360 or Tony Denton on 01953 605534

Notes for editors

• Around 80-100 patients per year are diagnosed with pituitary disorders at NNUH, of which only 2 are diagnosed with acromegaly and 2-3 with Cushings Disease.

• Patients are monitored on a regular basis and may need regular injections to keep their hormones under control. Around 15-20 per year will need to undergo surgery to remove pituitary tumours – this is carried out at the National Hospital for Neurology and Neurosurgery Hospital in London.

• One patient who has benefited from treatment who is happy to talk about how Cushings Disease affected her life and self-image is Lisa Hannant who was diagnosed at 19 years of age. She has had lots of treatment but is now very well and lives a normal life with her husband and two children.

• More information about pituitary disorders and the Pituitary Foundation can be found at www.pituitary.org.uk