We are delighted to welcome Liz Glenister to our support team. She is an expert patient on hypoparathyroidism and is the director of Hypopara 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 Hypopara UK in 2005 after being unable to find any support or information about her condition.
Now with over 500 members, Hypopara 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.
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!
Tel: 01892 525308 (9 am-8 pm)
Thyroid Cancer in Children and Young People - Jenny
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.
Jenny is happy to have contact with thyroid cancer patients and parents of children with the disease.
Tel: 01132 868386
Mobile: 07900 445927
Thyroid Cancer in Children and Young People - Julia
My name is Julia and I have two beautiful daughters, Amy 25 and Anna 22. Almost five years ago when Amy was just 20 she was diagnosed with papillary thyroid cancer.
I will never forget the moment when we were given her diagnosis, I have never felt so helpless and the knowledge that my daughter had cancer was both devastating and overwhelming.
As a mum I was used to being able to always sort my daughters’ problems out but this was something over which I had absolutely no control and I found that very hard to deal with.
Watching Amy undergo two operations and then radioactive iodine treatment was very hard and I would have given anything to have taken it away from her. The first few weeks after diagnosis were perhaps the worst as the uncertainty of what lay ahead was always playing on my mind.
Outwardly I always tried to put on a brave face and be strong for Amy but inwardly there were times when I felt like my world was crumbling around me. Finding out there was a charity that supported both patients and their families was a lifesaver.
Having someone at the end of the phone who could provide answers to all my questions and understand just how I was feeling made such a difference. Sharing my anxieties about Amy’s illness and equally my joy when her treatment was successful meant so much to me.
Without wanting to sound clichéd, having a child with cancer is a life changing experience but thankfully in most cases the prognosis for thyroid cancer is very good and Amy is living her life to the full.
She is 18 months away from qualifying as a doctor herself and has never let her cancer stand in the way of her achieving her goals. As a mum I feel blessed in so many ways and the journey we have been on as a family despite having many low points has ultimately brought us all closer together.
Happy to be contacted by either email or phone: 01723 352700
Thyroid Cancer in Children and Young People - Vicki
My name is Vicki Matthews and I live near Wrexham in North Wales. I have four daughters, the youngest of whom, Gaby, is now almost 17, 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 several episodes of RAI at Christies in Manchester.
Gaby works hard at being a normal teenager. She is at college, and has a part time job. She is often tired with unexplained aches and pains, but just gets on with life, without grumbling. Her cancer has not followed the expected path, not that we really knew what that was as it’s mostly an adult thing. She has had problems with antibodies, and recurrences.
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.
Tel: 07962069181 before 8 pm – leave a message if necessary and let me know how and when to contact you.