10th-anniversary

10th-anniversary

By Wendy Hughes
This week has been chaotic to say the very least as I try to remember all that needs to be done before a conference. There has been name badges ensemble, delegate pack to fill, endless conversations with the hotel and the members of the Stickler Syndrome Support Group who have different needs. Some are coming in wheelchairs, others with their guide dog and two dead/blind with there helpers. .
As I frantically pack my bag and head for Coventry I reflect on the other conference that I have run since 1994, which seems like a lifetime away now and I think of Gunnar Stickler, who sadly is no longer with us. I am often asked why Stickler syndrome and I take pleasure of telling people about the wonderful man who defined this condition. It is named after a Dr Gunnar B. Stickler who defined the condition in 1965, and names it Hereditary Progressive Artho-ophthalomopathy, but his colleagues named it Stickler Syndrome.

gunnar-stickler

gunnar-stickler

Gunnar B. Stickler was born in Peterskirchen, Germany on June 13, 1925 and attended the Wilhelmsgymnasium in Munich. Beginning in 1944, he studied medicine at the universities of Vienna, Erlangen as well as Munich. After graduation in 1949, he spent one year in clinical pathology and one in pathologic anatomy. In 1951 he emigrated to the USA after being accepted for an internship at the Mountainside Hospital, Montclair, New Jersey and subsequently for a fellowship in pediatrics at the Mayo Clinic. From 1953-56 he was a senior cancer research scientist at the Roswell Park Cancer Institute in Buffalo, New York and in July 1958, he was appointed to the Staff of the Mayo Clinic in paediatrics and practiced there for 32 years. He was elected to the Society for Pediatric Research in 1962, and later served as the President of the Midwest Society for Pediatric Research. In 1967 he was named as an official examiner of the American Board of Pediatrics, and became Professor of Pediatrics in 1969. In November of that year he became chairman of the Section of Pediatrics at Mayo Clinic and remained in situ until 1980. He was a member of the editorial boards of Clinical Pediatrics for almost 25 years, Pediatrics for 6 years, and the European Journal of Pediatrics for 8 years. Over the years he contributed over 200 articles to medical publications. His achievements included, of course, the description of hereditary progressive arthro-ophthalmopathy, better known as Stickler Syndrome.

duci-his-wife

duci-his-wife

In 1974 under Doctor Stickler’s leadership the Section of Pediatrics was renamed the Department of Pediatrics when Mayo Clinic combined the Sections of Pediatrics and Pediatric Cardiology. Under his leadership, the Department established a neonatal intensive care unit and an adolescent unit as well as clerkships in the new Mayo Medical School. Doctor Stickler served on the Admissions Committee and the
Medical School Coordinator’s Committee. He completed his term as Chair of the
Department on March 31, 1980 and retired in the fall of 1989.

stickler-at-our-first-conference

stickler-at-our-first-conference

He passed away suddenly at his home in Wayzata, Minneapolis, USA on Thursday 4
November at the age of 85. He attended my first conference in 1994, and came
again to our 10th anniversary conference in 1999. I will always remember him his
compassion, energy and unassuming manner. The world lost a great charismatic
man who cared passionately for his patients, and deeply for people affected by
Stickler Syndrome. His patients said if he was talking to a child he would kneel down
to be on the same level as the child. He was an active sportsman who loved
competitive sailing, ski-ing, cross country ski-ing, tennis and iceboating.
He was very much a family man too and was survived by Duci, his wife of 54 years
(who has since died) and his children. Gunnar will be greatly missed by his daughter
Kati, son-in-law Mark Lovaas and their children Kristina, Alexandra and Karl, and
also by his son George, his wife Diana and children Elsie and Kurt. Despite the
extremely adverse weather conditions a Bavarian ‘Leichenschmaus’ memorial
supper celebrating Gunnar’s life was held on 14 November 2010 at his daughter’s
home. About a hundred people attended and each was given a copy my book ‘Ten
Years On’, which includes a biographical sketch of Gunner Stickler.
Sadly I could not attend the funeral, but sent the following message to be read out at
the service:

v

v

“I am so sorry I cannot be with you today. I did try every which way, but it would have
been an impossible journey for me. I feel extremely wretched about not being able to
join you, but knowing Gunnar, I am sure he would have understood. When I was
diagnosed with Stickler syndrome in 1988 I found very little information in the United
Kingdom about it, so I wrote to the Mayo Clinic for more information, and of my
intention to set up a support group. Gunnar responded to my letter and enclosed
copies of his 1965 and 1967 papers and put me in touch with several American
families. This was so typical of Gunnar, and so began a warm correspondence. His
interest in every aspect of life shone through every communication. We discussed
many subjects ranging from the atrocities of war, to his love of sport, especially iceboating,
to his concerns of being an over protective grandfather. Thankfully I have
saved all his letters and will treasure them. I eventually set up the support group in
1989 for families with Stickler syndrome, the first of its kind, and when I mentioned
my intention to hold a ‘Stickler’ conference in the UK, Gunnar’s immediate response
was so humble, and he promised to be there at my side to support me. True to his
word he came over to our first conference in November 1994, and I will never forget the pleasure of
meeting him for the first time, his great compassion, his unassuming manner, and
our members can still recall his gentleness. His love and empathy for sick children
was obvious that weekend as he made a point of talking to them all, as well as their
families. Again when I wrote the book ‘Stickler the Elusive Syndrome’ I sent him the
manuscript to read and asked him to write a preface. In it he wrote: ‘While looking
on to the flooded Mississippi from my study I think of man’s continued effort to make
order out of chaos. I reflect on the remarkable book Wendy Hughes has written. She
describes very well the hereditary disease which we at the Mayo Clinic named. It is
society’s gain that Wendy’s condition was diagnosed and defined. Some order
replaced chaos.’

the-proud-grandfather

the-proud-grandfather

He was extremely interested and supportive of all my writings and was always keen
to receive copies of anything I published. He came over again to our 10th anniversary
conference in 1999 and when I presented him with a copy of ‘Ten Years On,’ which
includes a short biography of him, he could not believe it and kept saying ‘For me?
For me? Usually nothing is written about a medical person until they are dead!’ The
joy on his face that day was an image I shall always remember, and I am so pleased
I wrote that book.
He was so modest and kept rubbing my shoulder in disbelief saying he did not
deserve this fuss. The world has lost a great, unassuming man. His family have lost
a loving husband, father and grandfather, but through The Stickler Syndrome
Support Group and other groups around the world his legacy of defining the
condition will live on. He will always have a special affectionate place in my heart,
and I feel extremely privileged to have known and met him.
Next week I will tell you how the conference went.

About Wendy Hughes

Wendy turned to writing, in 1989, when ill-health and poor vision forced her into early medical retirement. Since then she has published 26 nonfiction books, and over 2000 articles. Her work has appeared in magazines as diverse as The Lady, Funeral Service Journal, On the Road, 3rd Stone, Celtic Connections, Best of British, and Guiding magazine. She has a column in an America/Welsh newspaper for ex-pats on old traditions and customs in Wales. Her books include many on her native Wales, Anglesey Past and Present, The Story of Brecknock, Brecon, a pictorial History of the Town, Carmarthen, a History and Celebration and Tales of Old Glamorgan, and a book on Walton on Thames in the Images of England series, a company history and two books on the charity Hope Romania. She has also co-authored two story/activity books for children. Her latest books are: Haunted Worthing published in October 2010, a new colour edition of The Story of Pembrokeshire published in March 2011, and Shipwrecks of Sussex in June 2011 and Not a Guide to Worthing in 2014. She is working on a book entitled A-Z of Curious Sussex which will be published in 2016 Wendy also works with clients to bring their work up to publishable standard and is currently working on an autobiography with a lady that was married to a very famous 1940’s travel writer. Wendy has spent many years campaigning and writing on behalf of people affected by Stickler Syndrome, a progressive genetic connective tissue disorder from which she herself suffers. She founded the Stickler Syndrome Support Group and raises awareness of the condition amongst the medical profession, and produces the group’s literature, and has written the only book on the condition, Stickler The Elusive Syndrome, and has also contributed to a DVD on the condition, Stickler syndrome: Learning the Facts. She has also writing three novels, Sanctimonious Sin, a three generation saga set in Wales at the turn of the century, Power That Heal set in the Neolithic period entitled Powers that Heal, and a semi biographical book entitled New Beginnings which deals with two generations coping with blindness and a genetic condition. She has also had a handful of short stories published, and in her spare time is working on several at the moment. She also gives talks on a variety of subjects including Writing and Placing Articles, Writing Local History, Writing as Therapy, Writing your first novel, etc, and runs workshops on the craft of writing – both fiction and non-fiction. She is a member of the Society of Women Writers and Journalists, and a member of the Society of Authors.