Patient Contacts: Specialised Support

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Hypoparathyroidism

We are delighted to welcome Liz Glenister to our support team. She is an expert patient on hypoparathyroidism and is the director of Hypoparathyroidism UK (HPTH UK).

Liz was a teacher with three young children when she was diagnosed with papillary thyroid cancer in 1992.

She developed permanent brittle hypoparathyroidism as a result of damage to the parathyroid glands during surgery.

Liz set up HPTH UK in 2005 after being unable to find any support or information about her condition.

Now with over 500 members, HPTH UK work with a team of medical advisors to improve treatment and provide support for patients with post-surgical hypoparathyroidism and other rare parathyroid conditions.

There is an online forum for members.

Email Liz
Tel: 01342 316315

 

Medullary Thyroid Cancer MEN 2a

Jo Grey had a thyroidectomy with parathyroids and adrenal glands removed in 2000.

Jo's son had his thyroid gland removed at the age of four as he was found to be a carrier of the gene responsible for MEN2a also.

Jo has been well since surgery but was found to have a bony metastasis (spread) from her thyroid cancer in her left shoulder before Christmas 2006.

In February 2007 she underwent a full shoulder replacement and is recovering well from this.

Jo is the chairperson of A.M.E.N.D. who provide specialist support for patients with medullary thyroid cancer and with whom Butterfly have strong links.

We are delighted to have Jo as one of our specialist support contacts!

Email Jo
Tel: 01892 525308 (9 am-8 pm)

 

Thyroid Cancer in Childhood

Jenny Barton lives in Leeds. She is married and has three children. Her youngest child is Tom.

At the age of three in 2005 Tom was diagnosed with Papillary Thyroid Cancer and underwent a total thyroidectomy.

We understand Tom is the youngest child in the UK to receive RAI which was done at Christies in Manchester.

Tom started school in September 2006 and is doing well although balancing his Thyroxin has not been easy.

Jenny works full time as a manager for Sainsbury's.

Read Jenny's story

Jenny is happy to have contact with thyroid cancer patients and parents of children with the disease.

Email Jenny
Tel: 01132 868386
Mobile: 07900 445927

My name is Vicki Hobson and I live near Wrexham in North Wales. I am married and have four daughters, the youngest of whom, Gaby, is now nine and has papillary carcinoma of the thyroid.

She was diagnosed just before her seventh birthday, after being treated for various other things for 18months!

She had surgery at Alder Hey which involved a total thyroidectomy and radical neck dissection, which left an 11" scar almost all round her neck!  She has since had RAI  at Christies in Manchester, including the last time for a recurrence. 

Gaby remains cheerful and attends our village school. She is often tired with unexplained aches and pains,  and takes levothyroxine and ondansetron.

I am a nurse myself and work part time to enable me to be with Gaby when needed. I am happy to offer support to other parents or patients who feel that I can help them.

Read Gaby's story

Email Vicki
Tel: 01978 855864 before 8 pm - leave a message if necessary and let me know how and when to contact you.

 

Key

Helpline: 01207 545469
Monday-Friday, 10 am-4 pm