Dr. Sabra Gibbens took over Dr. Laurel Dempsey’s practice at the Verona Medical Centre on July 1st of last year, a daunting leap for her. At the time, she had been practicing family medicine for three years, and was suddenly faced with the reality of managing a roster of patients, and running a business. She was also facing a shortage. The other doctor at the centre, Dr. Oglaza had taken a fellowship to study Public Health for two years, leaving Dr. Gibbens with responsibilities for his patients as well.

The result has been a steep learning curve in how to manage a business, a lot of scrambling to make sure that patients who need care the most get the care they need, a lot of work making sure referrals are made and records are kept, and the joy of learning all about the patients in a country clinic. All the while overseeing a major upgrade in digital record-keeping.

“When I first talked with Doctor Dempsey about taking over her practise it was as part of a two doctor clinic. Then Dr. Oglaza had this great opportunity that he was drawn to, and until now we have not been able to find a full time doctor to replace him. I have been lucky enough that since September Trish Warren, the nurse practitioner at the Sydenham clinic has been working here two days a week. Doctor Kalyniuk has been coming in on Monday and Friday afternoons to help cover the load, but she has her own roster of patients in Kingston and those are the only hours she has available,” she said.

Dr. Gibbens works most evenings and weekends, catching up on endless amounts of paper work, which was not what she had been planning, but other aspects of the clinic have gone very well.

“I have been lucky to have support from the staff here over the last 8 months. They have been with me from day one when we painted the waiting room on Canada Day. I also can’t say enough about the community. There is a committee in Verona that has been devoted to health care for years, and as soon as I arrived they began supporting my work here. Among other things, the community purchased an accessible treatment bed for one of the exam rooms, not a cheap item but one that is really necessary.

“It has also been wonderful, but a lot of work, getting to know the patients. Since they were new to me, I have had to spend more time with each patient to learn their history, to understand their needs,” she said.

One of the issues that she has faced, given the situation at the clinic, is having to turn down requests to join the clinic’s roster of patients,

“We have people calling every single day looking for a doctor, and we are saying no because we cannot meet the demands of the patients who are already here. How would they feel if I was taking on new patients? There are those exceptional cases where I have said I will take them on, for cancer patients or those who have recently suffered strokes or heart attacks and have no family doctor,” she said.

While the situation at the Verona clinic is difficult, it is only one of several in Frontenac and Lennox and Addington Counties that is short of doctors.

The Rural Kingston Family Health Organisation (FHO) is an administrative body made up of the physician led clinics in Sydenham and Verona and the Sharbot Lake Family Health Team in Frontenac County, and the physician led clnics in Newburgh and Tamworth as well as the Lakelands – Northbrook (L&A) Family Health Team in Lennox and Addington.

“Within our FHO there are a number of doctor shortages, as there are elsewhere in Ontario” said Dr. Gibbens. The situation I am facing here is not unique in the region by any means. We need more rural doctors.”*
Taking on the clinic has certainly been a major challenge, but Gibbens is no stranger to challenges.

Her preparation for being a country doctor in Eastern Ontario began in an unorthodox way, by studying philosophy in Minnesota. It was there that she met her husband, and they eventually moved to New York City to do graduate studies. Her husband did his PHD at the University of Toronto and they moved to Kingston when he got a full time position at Queen’s. At that point, as they were starting a family, the idea of pursuing her 'dream job' in medicine, began to take form.

“Ever since I was a teenager I had been thinking about family medicine, and with all the publicity about the lack of family practioners that was in the media at that time, in 2004 or so, and the way our lives were going, the opportunity was there to finally pursue it.”

She did some online science courses through Athabasca University while home with young children and eventually finished her pre-med requirements at Queen's. In 2009 she started Med school at Queen’s and started practicing medicine in 2013. Her family moved to a farm property in Godfrey in 2014.

While the sheer volume of work required to run the Verona Medical Centre has certainly stretched Dr. Gibbens, it has not weakened her resolve to make a difference for her patients and the local community.

In 2008 a consultant's report called for an ambulance base to be built at the junction of Roads 509 and Ardoch Road in Central Frontenac to serve residents in North and Central Frontenac and motorists on Highway 7 between Kaladar and Brooke Valley.

A lot happened after that, including a plan to build a base and a fire hall in Ompah, but after six years a base was opened in July of 2014 at the corner of Road 509 and Robertsville Road, a few kilometres from where the consultant's report had recommended, but in North Frontenac.

Since then, the base has been a success, serving residents in North and Central Frontenac as well as Lanark Highlands and Tay Valley townships, and motorists on Highway 7. It was originally going to be a satellite base, meaning crews would start and end their 12-hour shift at the Parham base and would then drive north, but from the day it opened it has been a full base, offering 12 hours of service.

Now, two years and two months after it opened, it has received a LEED Silver designation for its design and building materials. LEED stands for Leadership in Energy and Environmental Design. It is a rating system that awards points for everything from the materials used, the use of passive solar heating, and intangibles such as the placement of bicycle racks in parking lots.

At a ceremony marking the LEED certification last week, the contractor who built the base was on hand, as was County Warden Frances Smith, North Frontenac Mayor Ron Higgins, Frontenac County Chief of Paramedic Services Paul Charbonneau, and the paramedics who were on duty at the time.

“Both of the bases Frontenac County has built since taking on responsibility for paramedic services have been LEED certified,” said Charbonneau. “The Sydenham base is gold certified and this one obtained the silver. The effort to achieve this standard is consistent with the county's commitment to sustainability.”

Warden Smith, nearby in Central Frontenac, not far from the base's location, said, “It's wonderful to have such a good facility available to us here in the northern part of the county.”

LEED is a rating system that is a recognized mark of excellence for green building in 150 countries.

Did you know that every 56 days you can donate blood? Every 56 days you can help save a life!

Recently, someone my husband and I love needed to get a blood transfusion. Lonnie and I could do nothing to help this person with their ordeal, so we decided that the next best thing was to donate blood ourselves.

Being no stranger to donating blood, as I used to do it occasionally in the past, I kind of remembered what was involved. It is such an easy and rewarding decision that can change someone's life forever!

We phoned 1-888-2-donate and scheduled our appointment for the closest location to us that fit our schedule.

We made sure to drink lots of water the day of the donation and eat iron-enriched foods. I chose an extra can of tuna for lunch. Lonnie had left-over spaghetti. But extra raisins or even a granola bar that day probably would have worked as well.

We loaded our kids in the car the afternoon of the appointment and headed in to make a difference.

After getting the kids comfortable at the refreshment table, loaded with lots of complimentary juices, cookies and granola bars, my hubby and I got down to business.

We checked in with a piece of ID and the nurse then sent us to the station to have our finger pricked to test for anemia and make sure we would be able to donate.

The next step is getting your blood pressure and temperature checked and assessing your health. We were then ready to get things done.

Unfortunately, our donation chairs were not beside each other, so for the eight minutes of the actual donating of the blood, I had a TV in front of me to watch and Lonnie had to settle for trying to distract me with his funny faces and making me laugh.

After we provided our 488 ml. of blood unit, we waited our four minutes of rest time and then were free to go to the refreshment table to reload on snacks, coffee and juice!

Both kids were waiting for us with smiles and stickers that said future blood donors. I think they were both nervous for us at first, but once they saw for their own eyes what a difference we are making, they proudly said that they were going to donate too when they came of age. You are allowed to donate at 18, but can at 17 with parental consent.

O negative is the only blood type that is compatible with all other blood types and so it is in the highest demand, but it represents the smallest percentage of the population. Only 7% of Canadians share this blood type. This small percentage of people are also the unluckiest because they can only receive this blood type.

It is used in the most critical emergency situations: like for newborn babies and people with compromised immune systems or trauma victims.

Lonnie and I are not O negative, but we still donated because all blood is welcomed and needed by Canadian Blood Services.

The donations that are not used on treating patients may be stored for future testing or teaching and research; in short, it allows you to touch the lives of other fellow Canadians without opening your wallet.

Your blood type can save a life! It's safe and easy and giving blood takes less than an hour out of your day! Please call 1-888 2 DONATE (1-888-236-6283).

Wolfe Islanders have struggled over the years to develop and maintain medical services on the island.

There are many stories about difficult trips by car, horse and buggy, sleigh, ferry boat or other inventive means of transportation as patients scrambled to get to Kingston when in medical distress.

In the early years of the 20th Century there were doctors living on and servicing the island, at least on a part-time basis, but between the late 1930s and the early 1970s there was no consistent service.

That all changed in 1972, when Dr. George Merry, who lived on the island and had a medical practice in Kingston, approached the local council and asked them to look into the cost of establishing a medical facility on the island.

A public meeting was called and 200 people attended. Eventually $12,000 was raised, enough money to purchase a 12 ft. by 52 ft. trailer, which was initially located on Dr. Merry's property.

The clinic was stocked with supplies over the years and was staffed by Dr. Merry and his wife Catherine, who was a nurse.

When Dr. Merry took on more responsibilities in Kingston and was no longer able to offer services on the island, the trailer was moved to a location next to the fire hall and ambulance base at the edge of Marysville, on land that was donated by Mildred Hawkins-Walton and Keith Walton. A succession of doctors offered service in the trailer, until it burned down in 2008.

Within two years a new facility was in place, and in 2013 the most modern version of the clinic re-opened at that same site.

Currently, Dr. Deanna Russell holds clinic hours one day a week and has about 200 patients on roster at the clinic. There is also a nurse practitioner available for part of another day, funded by the clinic itself. One Friday a month, Frontenac Paramedic Services provides a checkup service for certain chronic conditions as part of its community para-medicine project, and every second Friday, a blood clinic run by Life Labs is held at the centre.

Linda Thomas is the chair of the eight-member Wolfe Island Medical Services Board. She moved to Wolfe Island 17 years ago and has done a lot of volunteer work since then. She said, “One thing led to another and I ended up on this board and then chairing it. It is a very good, hard working board, and we have volunteers who help us provide service. We have receptionists, people who help with maintenance; everything we do requires a volunteer effort.”

Since the board receives no outside funding, it uses fundraising to provide for the upkeep of the building and for the nurse practitioner service.

Its major fund-raising event of the year, the Wolfe Island Classic, is a running race that will take place on July 3 this year.

Thomas feels that Wolfe Island residents are under-served as opposed to other residents of Kingston and Frontenac County.

Certainly, compared to residents of Frontenac County who are rostered into any of the Family Health Organiz (FHO) clinics - the Sydenham and Verona clinics and the Sharbot Lake Family Health Team - Wolfe Islanders do not have the benefit of everyday service by doctors, nurse practitioners, dieticians, registered nurses, and other services that are available. They must travel to Kingston.

“I feel we can make an argument that we are remote, in terms of time if not distance,” said Thomas.

One of the difficulties that Islanders face is their limited numbers, and the fact that many are used to travelling to Kingston for emergency and ongoing medical and social services.

“We keep on working, however, and trying to bring more service to the island and trying to keep this building in use as much as we can,” she said.

While the municipality of Frontenac Islands does not fund the clinic, they have in recent years decided to rebate the property taxes that the clinic pays, which has been a big help, according to Linda Thomas.

Dr. Laurel Dempsey came to Verona in the mid-1990s from Toronto. She was interested in primary care and community-based medicine and wanted to participate in what she describes as the “first iteration of primary care reform in Ontario”.

Doctor Gordon Day was getting ready to retire from his practice in Verona at the time, and the two worked together for five years until Dr. Dempsey took over the practice, and bought the clinic building in the year 2000.

Since then she has not only run the clinic and served the large rural practice, which had been established since the early 1960s, she has also been the lead physician for the Rural Kingston Family Health Organisation (FHO). The Rural Kingston FHO is made up of all the primary care providers in Frontenac and rural L&A counties, including the physician-run clinics in Sydenham, Verona, Tamworth, and Newburgh, and the family health teams in Sharbot Lake and Northbrook.

“The idea behind the family health organisation was to offer a solid family medicine base for rural residents, with the addition of other services,” she said.

As the result of the FHO, dietician, psychiatric, dermatology, and even cardiac services have been offered at the Verona clinic and at other locations in Frontenac and Lennox and Addington.

Lynn Wilson, who has been the administrator of both the Verona Clinic and the FHO, has also managed an initiative called Health Links. Health Links targets the most medically vulnerable population, has also been established in the two counties.

But for her patients, Doctor Dempsey has always been someone who understood rural practice. When she took over from Dr. Day, she continued to put in long hours, and quietly made home visits to some of her very ill patients.

“She has been such an open and welcoming person, and from the start her relationship to the community and to her patients has been a warm one,” said John McDougall, who is a patient of hers and was one of the founders of the Verona Medical Services Committee. The committee now acts as a liaison between the clinic and the Township of South Frontenac.

The relationship between the clinic and the township was also an offshoot of Dr. Dempsey's efforts. She went to the Verona Community Association 10 years ago to talk about the future, envisioning back then that things would need to change in order to ensure the future of primary care in Verona upon her retirement.

Two of the issues that needed to be worked on were physician recruitment and the related issue of the ownership of the building where the Verona Medical Clinic is located.

“Doctor Dempsey told us, and this was confirmed when we went to meet with medical students to try and sell them on Verona, that the new generation of doctors did not want to take on the financial or administrative burden of owning buildings, so we went to the township and they were willing to take ownership of the building, which was very important,” said McDougall.

The clinic has been able to recruit two doctors over the past five years: Doctor Oglaza, who is about to do a residency in public health, and Doctor Gibbons, who will be taking over as lead physician at the clinic next month as Dr. Dempsey is retiring.

“One thing our patients need to know is that they have to register with Doctor Gibbons,” said Doctor Dempsey, “but patients don't need to worry that they are losing services, as she will take all of my patients on.”

An Open House is set for this Saturday, May 28 at the Verona Lions Hall between 2 and 4pm for the community to express their appreciation for the 21 years of service Dr. Dempsey has given to the community, and there will be a dinner later on. For tickets to the dinner, contact the Lions.

As for Doctor Dempsey, she may be retiring from her full-time practice but she will be continuing to work in Verona and at some other clinics on a more casual basis. A commitment to family medicine is not something that is turned off when doctors reach the so-called retirement age.

“She has always been committed to reform but is also a link to the way medicine was practised in the past,” said John McDougall. “She certainly has done well by us in Verona over the years.”

Lanark Frontenac Kingston MP Scott Reid announced this week that he will place his vote on the upcoming third reading to the government-sponsored Bill C-14 in the hands of his constituents.

A ballot is being sent out through Canada Post's neighborhood mail to all post boxes in the riding, and can be returned postage free to his office.

The ballot includes references to arguments in favour and opposed to the legislation.

In the letter to constituents that accompanies the ballot, Reid says Bill C-14 would amend the Criminal Code to allow what the government characterizes as “medically assisted dying” - what is more commonly known as “physician-assisted suicide.” If the bill becomes law, it will be lawful for a physician or nurse practitioner to euthanize a patient, as long as a series of conditions are met. The conditions will be laid out in a provision which will become section 241.2 of the Criminal Code.

Four conditions must be met, according to Reid. They are that the patient is over 18 years old; the patient must have, in the words of the bill, a “grievous and irremediable medical condition” and natural death must be “reasonably foreseeable”; the patient must have made a voluntary and informed request for assisted suicide; and a second physician or nurse practitioner must agree that the first three conditions have been met.

In explaining his decision to pass his right as an elected official to vote on the bill to his constituents, Reid made the point that in matters such as this one, the conscience of each constituent “is no less worthy than mine. Therefore it is the people, not the politicians, who should be able to directly determine the direction the country takes.”

Reid said he will tabulate the results of the constituency referendum just before the final vote on Bill C-14 is called, which will be June 6 or sometime earlier. He encourages constituents to vote early to make sure he receives their response in time.

Within the body of his mailout, Reid includes comments in favour of the bill from Justice Minister Jody Wilson- Raybould; Anne Sutherland from the Canadian Nurses Association; and editorials from the Globe and Mail, Ottawa Citizen and Toronto Star.

Comments opposed to the bill include those from the Physicians' Alliance Against Euthanasia; Larry Worthen from the Christian Medical and Dental Society of Canada; Alex Schadenberg from the Euthanasia Prevention Coalition; Andrew Coyne, columnist with the National Post; and Dying with Dignity.

For his own part, Reid talks about his concern that “conscientious objections of medical practitioners of medical institutions to provide or facilitate assistance in dying” should be protected in the bill if it passes, and he says he will work to have those protections included.

He asks that only one vote per registered voter be sent back to him.

The Sharbot Lake Dental Clinic is the only rural clinic in Frontenac, L&A and western Lanark counties. It was opened many years ago by Dr. Richard Dale, and as he approaches retirement age, Dr. Dale has recently ensured the future of the clinic by selling the business to Dr. Amir Faizi, a dentist based in Kingston who is finishing up his military service later this year.

Dr. Dale will keep working at the clinic for up to two years, but Dr. Faizi has already had an impact on the service. He is now opening the clinic on Fridays and selected Saturdays and has added root canals, perio (gum) surgery and complicated extractions to the clinic's list of services.

Amir Faizi graduated from Dental School at the University of Toronto and signed up with the Canadian military after that, eventually being stationed in Kingston. As he contemplates a future after his military service is complete, Dr. Faizi started looking around for a dental practice.

“I started looking around for a dental practice that would be reasonable, and this seemed like a good practice in a good area, so I gave Dr. Dale a call and he was interested,” he said.

That was in late November, 2015, and within two months the sale was made.

“He said that he had been thinking about selling the practice within the next couple of years, so my timing was good. We met and I found him very trustworthy and straightforward, and the staff are very good and experienced. It was a pleasure dealing with everyone,” he said.

The transition took place on February 2, and while Dr. Dale continues to see patients Mondays to Thursdays, Dr. Faizi has been coming in on Fridays to do the newly added procedures. In order to do the new procedures, new equipment has been purchased, and four or five root canals, for example, have already been done. In the future the clinic will be adding more services, such as IV sedations and implants, once the necessary equipment has been purchased.

“For our patients who don't want to have to go to Kingston or Perth for a range of procedures, we will be offering them,” he said, adding that the fee for service at the Sharbot Lake clinic follows the guidelines suggested by the Ontario Dental Association fee guide, keeping to the lower end of the scale.

Dr. Faizi lives in Kingston with his wife Padina Pezeshki, and their six-month-old daughter, Liah. Padina is a bio-medical engineer who has had success in using radio frequencies in the treatment of cancer. A short description of her work can be found on Youtube – www.youtube.com/watch?v=68rzgFLVcNo.

Geographical challenges are only one of the issues of concern as the Ontario health care system works on finding ways to deliver better care, at a better price, to Ontario residents.

In a process that started with the development of 14 Local Health Integration Networks (LHINs) 10 years ago, attempts continue to break down barriers between health care service providers in order to provide seamless service for Ontario residents. Funding for ambulance service, long-term care facilities, hospitals, mental health and home care services all comes from the LHINs, although some primary care physician services are still funded directly by the Ministry of Health.

Three years ago, some of the LHINs, including the Southeast LHIN, which covers Hastings, L&A, Frontenac, Leeds Grenville, and Lanark Counties, established Health Links. Health Links are an attempt to coordinate services for patients suffering from chronic conditions such as Chronic Obstructive Pulmonary Disorder (COPD), Diabetes, and a number of cardiac related conditions. The idea is to get doctors, nurses, dietitians, and others to work together to keep patients in a healthier state, in their own communities and to limit hospital visits. Health Links are designed to improve the health of the segment of the population that uses the health care system the most, and save money at the same time by dealing with health issues, before they lead to expensive hospital visits.

The next phase of this evolution in care, according to advocates such as Richard Schooley, the chair of the board of the Perth & Smiths Falls District Hospital, is to develop Health Care Hubs.

“We would like to see Health Care Hubs do for the rest of the population what Health Links is trying to do for 5% of the population, those with what the health care system calls “co-morbidity” or complex chronic health care issues,” he said in a telephone interview with the Frontenac News this week.

Schooley was scheduled to address Frontenac County Council this week to talk about plans for a health care hub for Lanark, parts of Leeds and the Thousand Islands, and Central and North Frontenac.

“Rather than each of the health service providers being funded individually, the health hub would get all the funding and it would dole out the money. To a lot of providers this is threatening, I know, because what we are talking about is a whole new system. We would start to put some mandatory expectations in place for all providers to plan and work together, and a hub can morph from that,” he said.

While this is very early days for the hub, Schooley is buoyed by something that the Minister of Health, Dr. Eric Hoskins said at a conference in November.

“We must undertake structural change to our health system,” he said, and then added that to do this the system must be “deeply integrated at the local level, starting with strong local governance”. At the same time Hoskins announced the formation of the first rural health hubs.

The health hub idea has been supported by local MPP Randy Hillier, who is not normally supportive of Ministry of Health initiatives. But in this case he sees the potential for some planning to be done from the grassroots up rather than the other way around.

“It’s great to see it starting here in the communities and not just waiting for more decisions or policies from the province,” Hillier said.

The Perth & Smiths Falls District Hospital has decided to take the lead in organising a hub, and to do so they looked at creating geographical boundaries that fit with the travel patterns of people in the region with a view towards creating a hub with enough size, 100,000 people, for some economies of scale.

That meant expanding beyond the reach of the Perth & Smiths Falls Health Link to include all of Lanark County, including Mississippi Mills Township and the cities of Carleton Place and Almonte, as well as looking to Central and North Frontenac.

They made a pitch for support to the County of Lanark in December and Schooley was scheduled to come to Frontenac County this week, but the meeting he was set to attend on February 17 was canceled due to snow and he will have to wait until March 16 to make his pitch.

“Many residents of Central and North Frontenac are drawn to Perth for services, and that is one reason why we are approaching Frontenac County to send a representative to the health hub,” said Schooley.

The name and geographical boundaries of the hub also borrow from the watershed-based boundaries of conservation authorities, which is something that Schooley also pointed to.

“Watersheds determine communities of interest and travel patterns follow from that,” he said.

Some of the complications that the Mississippi-Rideau-Tay Health Hub will have to overcome relate to how funding and working relationships between health care providers are currently set up. The two family health teams that serve Central and North Frontenac - the Sharbot Lake and Lakelands family health teams - are affiliated with the Rural Kingston Family Health Organization, which is based in Verona and is within the sphere of the Kingston hospital system.

As well, Mississippi Mills is covered by the Champlain LHIN, which includes Ottawa. The rest of the Misssippi-Rideau-Tay territory is part of the Southeast LHIN, whose headquarters is in Belleville.

If Frontenac County decides to send a representative to the hub, it will be Mayor Frances Smith from Central Frontenac, who has been tapped to take on the role. She has been on the advisory committee to the Sharbot Lake Family Health Team since it was established.

Schooley said that once the six municipal representatives are determined, the hub will be looking for 12 community representatives from across the region.

In an effort to spread awareness about addiction and mental health services that are available to residents in North, Central and South Frontenac, and Lennox and Addington, Melissa Switzer-Ferguson, an addictions counselor with Addiction & Mental Health Services of Kingston Frontenac Lennox and Addington (AMHS-KFLA), wants rural residents to be aware that she is currently offering a number of services in Sharbot Lake and in Verona. Ferguson, who is currently working with the Sharbot Lake Family Health Team at the medical center in Sharbot Lake, said that she hopes to make residents aware of the wide variety of free and confidential services that she offers. These include individual counseling for substance and behavioral addictions; group counseling services; rural mental health outreach; and other treatment groups for both mental health and addiction. Staff at AMHS-KFLA also partner with other community organizations to bring their services to those in need of them. All of these services are free of charge and confidential, and appointments can be made either through self-referrals, through family doctors, or by concerned significant other family members. While addiction services are easily available to urban dwellers, residents in rural areas, who can often tend be isolated, also face other challenges to accessing services like a lack of transportation, which can make getting the help they need an obstacle. Ferguson said that the goal of the rural outreach services are to make the services more available, while reducing stigma and letting residents know what sorts of programs are available to them.

“The ultimate goal,” Ferguson said, “is not only to raise awareness of the services that are available but to provide rural residents with equitable and accessible addiction and mental health services.” With the holiday season approaching, many people can find this time of year particularly difficult, and Ferguson said that her organization also has a crisis hotline that operates 24/7 and can be reached by calling 613-544-4229. Anyone wanting additional information about the many and varied supports and services offered through AMHS-KFLA can call 613-544-1356.

Marilyn Bolender is happier these days. After suffering for five years from a condition that can only be described as a maddening, she has found an experimental treatment that is working.

The disorder she suffers from is not well known, and that is one of the reasons that she has come forward to talk about it after only letting family and close friends know about it for five years.

The condition is called Chronic Ideopathic Urticaria (CIU). It is described by the website e-medicine as “not a single disease but a reaction pattern” that persists for longer than six months.

In lay terms, it is hives or welts that can be as large as three to four inches across. They do not last longer than two hours before receding, but new ones occur regularly.

Like many other skin lesions they are skin irritations and they tend to be itchy.

“It is hard to describe the sensation,” said Bolender, who has now been hive-free since March. She said that she had hives or welts all over her body, except on her face, on an ongoing basis for five years.

“Nothing worked at all. I went to allergists and skin doctors, and tried all kinds of antihistamines and other medications, but nothing touched it,” she said.

Finally last year, she began to see a skin specialist in Peterborough, Dr. Melinda Gooderham, who concluded that in Marilyn's case there was no allergy involved.

A trial for a drug called Xolair, originally developed as an asthma drug but later approved for use on skin disorders in the United States, was undergoing a trial in Ontario and Dr. Gooderham enrolled Bolender in the trial.

“They started me on 150 units, which did not work, then upped me to 300, and that did not work either. When I was told that I was going to be dropped from the trial at that point, I just lost it. I didn't know what to do. Dr. Gooderham said to give her a bit of time, and eventually she convinced the company to put me on a larger dose, 450 units, and after a couple of injections it started to work.”

The drug is expensive, but fortunately Bolender is covered under a drug plan that covers 80% of the cost, and the company that produces Xolair is covering 92% of the extra cost, leaving Bolender with a cost of $42 per month.

“I'm very grateful to have found relief” she said, “and that is why I am coming forward now, since many people who suffer from CIU are unwilling to talk about it because they are embarrassed. But whether they receive the treatment that works for me or another form of treatment, it is important to be diagnosed and to start finding a way forward,” she said.

The company that produces Xolair, Novalis, have put up a website about CIU, called “Itchingforanswers.ca”

The website provides information about CIU and does not talk about Xolair. Instead it promotes the use of a new generation of oral antihistamines (Ni-AH) as a first treatment option.

Xolair, which is expensive and carries a degree of risk, is prescribed only for those for whom anti-histamines are ineffective.

“Our main message is that people who suffer from CIU identify the disorder and seek effective treatment,” said Nick Williams, a communications consultant with Argyle Public Relations in Toronto, a company that has a healthcare and pharmaceuticals division.

It was Williams who contacted the News about Marilyn Bolender's story.