ADSHG Founder Deana Kenward: From an Unusual Tan to the TV Times and beyond! March 2009 Interview originally in ADSHG members magazine. One of our longest standing volunteer Noel Hawks charts the story of the Addison's Disease Self Help Group's founder Deana Kenward, from her diagnosis to starting the group, to the time she retired from employment in 2009. Deana is pictured above with her son Daniel at the London Landmarks Half Marathon. Noel writes: We might think that all Deana has done for the Addison’s Disease Self Help Group since 1984 is nothing short of miraculous but did you know that Deana herself is also something of a miracle? In the process of her coming into the world she not only nearly killed her poor Mum but also came close to dying three times. She was born prematurely and, at two months old, she nearly died and was christened again. Support ADSHG by becoming a member - join here! The Early Years Born in Kingston Hospital, Kingston Upon Thames, a highly interesting mix of Greek, American Indian and Irish, Deana grew up in Tolworth and Surbiton and attended St. Matthew’s Primary School before going on to Tolworth Central Girls School. She was always shy and suffered a nervous breakdown due to stress at the age of fourteen and has often wondered if this might have been the cause of her Addison’s many years later. But she did not enjoy school, “couldn’t wait to get out”, and left as soon as she could at the age of sixteen. Working Life After working in a factory for a month she settled down to gold blocking and typesetting for a company who specialised in producing leather goods and company diaries. Deana really enjoyed the work, even when it got incredibly busy at Christmas time, and this dedication to hard work has remained with her ever since. Her diligence was noted by her employers and, before long, she was placed in charge of six people. After several years with the same company she got married and, when her first son Matthew was born in 1970, she left work to become a “full time mother and housewife”. Not long after this she broke up with her husband and moved back to her parents’ home with Matthew. She had to wait five years for her divorce to come through and, in the meantime, she met Roger Kenward who “was so outgoing and brought so much out in me. He gave me confidence.” They were married in 1975 and moved to Guildford where Deana “worked from home and in a pub” and she “fell for Daniel in 1978.” When Daniel was eighteen months old Deana started work at the local J. Sainsbury supermarket where she would stay for the next twenty six years. The Operation Deana was hoping to rapidly recover following a minor operation in May 1983 and “get on with my life” but she “never got well again” and went to her doctor complaining of feeling tired, sick and unable to face her food. The doctor prescribed the same anti-sickness medicine that he had given to her son for his travel sickness and “it did help a little”. During that summer “I had lots of things wrong with me including lethargy, tiredness, muscle weakness and cramp” but none of these were “bad enough o bother the doctor with.” However she had to return to the doctor when “her knees were not working and her muscles were going” but the doctor just said she was an “overworked mother of two.” It was a group practice and Deana never got to see the same doctor twice. Due to her Greek origins Deana’s skin had always been fairly dark and she tanned quite easily but by the end of September she was so dark “it was untrue” and Deana noticed black marks on her toenails, gums and lips. By mid October she was beginning to feel really weak, had lost a stone and a half, had no appetite and was “so cold all the time” but everyone kept saying how well she looked because of the weight loss and the tan. The doctors still had no explanation for her ailments. By this stage she was sleeping downstairs because she could not climb the stairs to her bedroom. "I don’t know how I got through the dark months of that year I was so ill” Looking back Deana says “I was convinced I was slowly dying but I somehow managed to convince my family I was a lot better than I really was.” By now she had reached a stage that “if I slept all morning then I had the strength to pick up the boys from school and cook an evening meal.” In November Deana collapsed at Daniel’s playgroup and was brought home. “From then on things are a bit blurry” although she can remember her own GP arriving and taking blood samples and later being in an ambulance and undergoing tests in the hospital. “I know I cried because I could not keep my legs still and I was so scared of what was happening to me.” The Journey to Diagnosis Roger had phoned the surgery and, when the doctor arrived at the house, he asked “Where’s Deana?” because, by now, Deana “looked about eighty and was really black.” The doctor asked “Have you been to Africa?” but that would come many years later and then “something rang a bell.” Apparently he had had to deal with a case of Addison’s over forty years previously. He asked hundreds of questions but “I don’t remember much” and Roger then received a phone call at home later that evening saying “There’s an ambulance on the way and we know now what Deana’s got!” Sometime during that first night at the Royal Surrey Hospital Deana was told that she had Addison’s disease that it was incurable but treatable with steroids and that she would make a full recovery. “I was in intensive care for three or four days. Two more days and it would have been too late… I hadn’t eaten properly for two weeks.” Deana had gone “right down to six stone” but was sitting up in bed with a boiled egg and toast when Roger paid his first visit. She spent ten days in the hospital before being allowed home just in time for Christmas. It took three months before she felt really well again, regained most of the weight she had lost and she then returned to work. At first she felt nothing but relief because, during the months prior to her diagnosis, she had been told repeatedly that there was nothing wrong with her. The worry and fear came later when she was informed just how close she had been to renal failure and that death had been just hours away. Deana “did not want to be dependent on medication for the rest of my life” but she thanked God for the doctors “especially a wonderful Irish doctor who she is not allowed to name.” A Journey of Discovery Once life had returned to normal Deana wanted to find out more about Addison’s disease. “What will it be like living with Addison’s? How will it affect my life? Will my children develop it? These and many more questions filled my mind constantly.” She went to the library and wrote to every magazine she could think of “only to find out there was nothing at all” and, in the end, she wrote to Katie Boyle at the TV Times after “I’d done every other magazine I could think of.” Katie replied and said “Why not start your own group?” and, after much deliberation and discussion with and encouragement from her family and friends, Deana decided to “go for it.” She wrote back to Katie Boyle who put her in touch with Contact A Family, a London Based Charity, who printed her letter in the TV Times in July 1984: “If you’re interested write to them and they’ll forward the letters on to me.” The Mailbag and the Carbon Paper The response was better than she could ever have hoped for. “The postman rang the bell. He had about a hundred letters!” Deana replied hand writing to every one of them using carbon paper for copies. Fifty people chose to join and this was the start of the Addison’s Disease Self Help Group. She carried on doing everything by pen and ink on her front room table until Christmas when Deana’s Mum bought her a typewriter. Her friend, Lynda Harris, was a Lioness (a female member of the charitable Lions Club organisation) and the following year the Lions Club presented Deana with a word processor. In 1992 she wrote to her members and asked “would you like a newsletter?” They replied in the affirmative but Deana found “it was hard to fill it up all on your own.” The Lion Club's donation of a word processor to Deana, enabled her to send typewritten letters to members. Nick Willson was the first to offer help and Alan Lack, another early member, designed the first logo with the clasped hands for the group’s headed notepaper. “I printed my own poster, contacted women’s magazines and phoned and wrote to medical directories who published the details but it was hard to make people aware”. Deana originally wanted to inform people about Addison’s and that “it’s incurable but treatable!” but inevitably “over the years I learnt so much about Addison’s from having the illness myself and from listening to the experiences of my group members. "Those of us who were not diagnosed until we were really ill would like the medical world to be much more aware of Addison’s disease and its symptoms. While we think we suffered unnecessarily we do realise how difficult it must be for doctors who only have a few vague symptoms to go by at the onset of the illness plus the fact that a great number of doctors have never seen a case of Addison’s disease before.” The ADSHG's first Medical Talks and Meetings Deana first met Professor Mike Besser, one of the leading endocrinologists in the UK, not long after she was diagnosed. She had gone up to see him at St. Bart’s and he sent his secretary off to get information for her: “lots of pages photocopied from a book of endocrinology”. He gave his first talk to the group in December 1998 after coming straight from a funeral where “he was insistent that we all took our medicine before we got up in the morning.” For the next eleven years Professor Besser answered the medical questions in the newsletter but always said not to put his name. He came to talk to the group again at The Stoke Hotel in Guildford in 2003 and “then Professor David Russell Jones came along to talk to us about Addison’s.” Deana's early social meetings “I had started holding meetings at home but there were more than fifty people!” so Roger said “why not hire the Scout Hall?” Lynda Harris always helped at the meetings “making endless cups of tea and coffee” and was nicknamed the ‘doing lady’ by a group member who has since sadly passed away. “Lynda and I would go up the night before to clean the place up… one time we had eighty people in that small hall! I used to dread the meetings!” but Deana had to overcome her natural shyness for the good of the group. “And we started going to meetings around the country… then Scotland and Ireland. If we went to see a Daniel O’Donnell concert I’d book a meeting nearby and when we went to see him at Bournemouth we asked Daniel if he would be our patron. He said yes… but in name only!” On one of her trips to Belfast there was an armed raid on her hotel just as she was sitting down to eat… the robbers fired a shot but no-one was hurt. However if Deana had chosen a different table then that bullet might well have made contact with one of her party. Another miracle! Going Online “We went to a conference in Oslo and everyone there was on about email. I didn’t have a clue! I was told I’d need a computer and all the group members sent money so I could afford to buy one. But then I tied the phone line up!” For sixteen years Deana ran the group single-handedly with support from founding members and her friends and family. In 2000 the activities of the group entered a new era when Nick Willson created the e-group and Sarah Baker and Katherine White obtained a grant from the Society for Endocrinology to publish their comprehensive Owner’s Manual. The ADSHG website was launched the following year. The first of the group’s Annual Medical Lectures was held in 2002 and the current board of trustees began to take shape. In 2004 membership totalled six hundred when the ADSHG applied for accreditation from the Charity Commission and became a registered charity and this has now doubled to over twelve hundred members. Keeping in touch Long standing members of the ADSHG probably know as much about Deana’s family as Deana’s family and many have said that receiving the newsletter was like getting a letter from a friend. Deana has always felt that it was like writing to friends and her warm understanding has always been the heartbeat of the group. When Roger died in May 2006 she received countless “lovely letters, cards and Mass Cards. Roger is still missed so much but we will get there…” Deana is still very busy with “two to four hours spent most days on work for the group… cheques, standing orders, new members, emails and letters. … but I love doing what I do. The group was a godsend… it really helped me to get through because it gave me something to focus on.” “Living with Addison’s is not a problem for me. I have had two crises but, apart from them, I am very well. I see my specialist every six months and have regular day curve tests and bone density scans. I always wear a Medic Alert emblem and carry my steroid card with me at all times. I have an Emergency Hydrocortisone Injection pack at home and have been told to double my dose in cases of infection or fever. People often ask if there is really anything wrong with me because I always look so healthy and I have more energy than some of my friends. I do find though, that along with many others, mental stress affects me much more now than it did prior to my diagnosis." Empowering Expert Patients "Not all Addison’s patients are as lucky as me though. Some have never had a day curve test and rarely get to see a specialist. However since joining the ADSHG many have told me that, because they knew what to ask for, they have now had these tests and their medication has been adjusted accordingly. They have also told me how helpful it is to be able to talk and even meet someone else with Addison’s because it is such a rare condition." "Many had never spoken to someone else with Addison's until they joined the group. We are always told that that if we are replaced correctly with hydrocortisone then there are no side effects but some members of the group have osteoporosis, many have weight gain problems and some experience mood swings and periods of extreme tiredness. Associated problems including diabetes and thyroid malfunction have occurred with many members and many have found it difficult to achieve the right balance with their various medications. It’s very hard for people with children who have Addison’s not to be too over protective: they must learn alongside their child all about the illness and how to cope with it as they grow up." "In an ideal world all Addison’s patients would be monitored regularly by their local hospitals and all hospitals would issue an Emergency Injection Kit and teach their patients and their families how to use them. We try to help others by listening to their problems and worries, especially when they are newly diagnosed, and try to advise them using the experience that I have gained through a quarter of a century of running the group. I’m not medically qualified in any way so my advice is from a patient’s point of view. I also try to put group members in touch with each other and many friendships have been made within the group which is still the only group for Addison’s in the country.” A Ticket to Kenya Deana actually got to go to Africa in 2006 when she visited Kenya through Sainsbury’s Local Hero scheme. This is an annual award for charities that members of their staff help in their spare time and Deana was chosen as one of the overall winners. The ADSHG received £500 and Deana “got to go to Kenya” which was beautiful but where she found “the poverty was heartbreaking” as she visited the Fair Trade flower and coffee growers. Everyone on the trip came home promising to ask everyone they knew to try and buy as many Fair Trade products as possible in future. After twenty five years loyal service with J. Sainsbury Deana was invited to an awards ceremony in London in July 2007. It was “a lovely day with food and drinks laid on… the home made chocolates were to die for.” On July 29th 2008 she retired after twenty six years and found “it is a very strange feeling knowing I will never have to get ready for work again but I am sure I will get used to it…” She has never ceased to work tirelessly for the ADSHG but has recently “started knitting teddy bears for underprivileged children all over the world with her friend Jenny. So now I need not get bored in the evenings and we are helping others in the process. A Gift That Keeps On Giving It is impossible to ever overstate just how important a step it proved to be for everyone with Addison’s disease when Deana first founded the group and how hard she has worked for the ADSHG over the ensuing twenty five years but, typically, Deana feels that her self help group has helped her more than she has ever helped them! “This group is the best in the world because you have helped me through some tough times with your thoughts and prayers…” We all wish Deana a long and happy retirement but we are all hoping that she’ll continue her unstinting work for the group for another twenty five years at least! We can only conclude by giving Deana the same sound advice that she has always dispensed: “Do take care and keep taking those tablets…” Through Deana's hard-work and dedication, our charity has gone from strength to strength, increasing the support and information we are able to provide to people with Addison's and their families. In 2012 Deana was awarded an MBE for her years of dedicated service to the ADSHG. Noel's Sources: Interview with Deana Kenward Harrogate 16th March 2009 G Michael Besser & Michael O Thorner: Comprehensive Clinical Endocrinology. Third Edition Mosby Ltd. 2000 ADSHG Newsletter Issue 84 June 2006 ADSHG Newsletter Issue 86 December 2006 ADSHG Newsletter Issue 87 March 2007 ADSHG Newsletter Issue 90 December 2007 ADSHG Newsletter Issue 93 September 2008 ADSHG Newsletter Issue 94 December 2008 ADSHG Newsletter Issue 95 March 2009 View our past Newsletters and Magazines Author: Noel Hawks As well as being a valued volunteer at the ADSHG, Noel is a music journalist, photographer and author who specialises in reggae. Date: March 2009 - interview originally in ADSHG members magazine.