Madison Clinic Helps Young Diabetes Patients Manage Their Own Care

When children are diagnosed with type 1 diabetes­ – one of the most common chronic conditions of childhood – parents typically shoulder the burden of managing their care.  

This includes a rigorous daily routine of supervising what the child eats, checking blood sugar levels, administering insulin and keeping regular medical appointments. It’s a big job, and as children become independent adults, it’s one they must gradually take upon themselves. 

The Madison Clinic aims to improve the lives of patients and their families and to ease the burden of diabetes through compassionate and individualized management with emphasis on education, empowerment, and use of advanced technologies.

Visit the clinic’s website for more information.

This process of “transition” is important for maintaining optimal health, and it is highly influenced by socio-economic and cultural factors.

UCSF psychologist Diana Naranjo, PhD, an assistant professor of pediatrics, is particularly interested in how the health care transition occurs in ethnic minority families. Her work is part of a broad effort to smooth the transition process for all young adult patients at the Madison Clinic for Pediatric Diabetes at UCSF Benioff Children’s Hospital.

An Extra Developmental Challenge

Patients in the transitional age group­­ – 18 through 30 – face special challenges when it comes to managing their diabetes.

Diana Naranjo, PhD

“Young adults, who are still evolving decision-making skills, often feel ‘I’ve been dealing with this my whole life. I want it to go away,’” said Naranjo. 

An autoimmune disorder in which the body attacks the pancreas, type 1 diabetes requires that patients take over the metabolic balancing act that this organ performs in healthy individuals. That requires a daunting series of tasks that must be performed every day. If poorly controlled, the disease can cause serious short and long-term consequences.

Managing type 1 diabetes often conflicts with normal developmental behaviors, said Naranjo.

Experimentation with drinking alcohol, for example, has extra risks for youth with diabetes because it can affect blood sugars and impair judgment. Young people may also struggle with how to disclose the demands of their disease when starting an intimate relationship.

Guiding the Transition Process

The Madison Clinic is working to ease the transition process for all its young adult patients. These efforts are led by a team that includes pediatric diabetes specialists Saleh Adi, MD and Stephen Gitelman, MD, endocrinologist Roger Long, MD, and Megumi Okumura, MD, a specialist in chronic disease management.

Patients complete an annual survey that Naranjo and the team have developed that helps identify how much teen and young adult patients know about their disease – with questions about their knowledge of medical management, insurance, sex and drugs. 

Transition coordinator Marcela Arregui-Reyes sits down with every patient age 16 or older to complete the survey and prioritizes specific areas where more education is needed.  With most patients making four visits to the clinic each year, the goal is to fill in the most important educational gaps at each visit.

How Transition Differs for Minority Families

Ethnic minority patients in the transitional age group often wrestle with additional challenges, according to Naranjo.

As they reach adulthood and age out of public healthcare systems for children with chronic illness, some may be left uninsured or with very limited healthcare options.  This can lead to poor diabetes management and higher utilization of emergency room services.

Madison Clinic for Pediatric Diabetes at UCSF’s Mission

Bay campus

Naranjo, who is fluent in Spanish, has a special interest in cultural differences in patients’ perceptions about diabetes and its care.  

The Madison Clinic serves a higher-than-average percentage of minority patients with type 1 diabetes, making it a good site for researching these differences. Roughly 25 percent of the clinic’s families are Latino, and African-American families are proportionately higher than in the overall U.S. population of patients with diabetes.

Naranjo has gathered detailed information from 20 clinic families so far, using a combination of surveys and in-depth interviews with patients and family members.  One emerging pattern, according to Naranjo, is that Latino parents do not necessarily value transition in the same way that the medical world does.  The transition model used in medical settings is designed to help young adults take over monitoring their health, making their own appointments and interfacing with insurance companies or other agencies.  

“Latino parents often wonder ‘Why should I burden my child in that way?’” said Naranjo.  Many Latino families continue living together longer into adulthood than non-Latino families, and consequently, parents continue to play a big role in their young adult’s diabetes management.

Latino children may also look at the transition process differently, particularly if their parents are uninsured and struggling to treat their own chronic health problems, such as high blood pressure or type 2 diabetes.

Naranjo will continue her research in the coming year. In the meantime, her findings suggest that health transition specialists may need to tailor the information they give to minority families to match different perceptions of living with a chronic disease.

Oregon Faith-Healing Parents Charged With Manslaughter In Daughter's Death …

On Friday, Travis and Wenona Rossiter were brought before a judge in Linn County, Ore., and plead not guilty to charges of manslaughter for their daughter Syble’s death. In February, the 12-year-old girl died in their home because of complications due to type 1 diabetes. She did not receive medical treatment for the condition.

“The 12-year-old had a treatable medical condition and the parents did not provide adequate and necessary medical care to that child,” said local police Captain Eric Carter. “And that, unfortunately, resulted in the death of her on February 5 of this year.”

Although unconfirmed, the couple is rumored to have withheld medical treatment in favor of faith-based healing.

The Rossiters attend the Church of the First Born, a church that allegedly encourages its members to seek faith-based interventions for illnesses instead of modern medical treatment. Its website cites biblical verse James 5:14, “If any be sick, call for the elders of the church, let them pray over him, anointing him with oil in the name of the Lord.”

Syble suffered from type 1 diabetes, formerly known as juvenile diabetes, a condition in which a person is unable to produce insulin. Without insulin therapy, type 1 diabetes is fatal. The most common cause of death among pediatric diabetics is diabetic ketoacidosis. Resulting from the buildup of fat metabolites called ketones, diabetic ketoacidosis  is characterized by vomiting, dehydration, confusion, and eventually leads to coma and death if left untreated. The clinical details of Syble’s death have not been made public.

With insulin therapy administered through injections or an insulin pump, people with type 1 diabetes can live nearly as long as the general population. 

The church websites explains that its members should comply with local health officials. “If you choose not to take your child to a doctor, then we urge you to immediately notify the county health department and the state department of human services using our corporate forms.”

Tragically, if the Rossiters are found guilty, they would not be the first parents deemed liable in the death of a child within the church. In 2012, Brandi and Russel Bellew, also of the Church of the first Born, pleaded guilty to criminally negligent homicide after their son, Austin Sprout Creswell, died at age 16 from an untreated infection secondary to a burst appendix. At least 22 children associated with the Church of the First Born have died from lack of medical treatment since 1964, according to the group Children’s Healthcare Is a Legal Duty.

A neighbor interviewed by local CBS affiliate KOIN 6 News described Syble as a quiet girl who enjoyed riding her bike. “She seemed shy to talk to people because they picked apples out of my yard,” the neighbor said.

Type 1 Diabetes Drug Proves Effective in Clinical Trial

An experimental drug designed to block the advance of type 1 diabetes in its earliest stages has proven strikingly effective over two years in about half of the patients who participated in the phase 2 clinical trial.

Jeffrey Bluestone, PhD

Patients who benefited most were those who still had relatively good control of their blood sugar levels and only a moderate need for insulin injections when the trial began. With the experimental drug, teplizumab, they were able to maintain their level of insulin production for the full two years – longer than with most other drugs tested against the disease.

Results are published online in the journal Diabetes, and will appear in the November issue of the print edition.

The treatment did not benefit all patients. Some lost half or more of their ability to produce insulin – a drop similar to many of the controls not receiving the drug. Reasons for the different responses are unclear, but likely involve differences in the metabolic condition of the patients and in the severity of their disease at the trial’s start, the researchers said.

Kevan Herold, MD, PhD

“The benefits of treatment among the patients who still had moderately healthy insulin production suggests that the sooner we can detect the pre-diabetes condition and get this kind of drug onboard, the more people we can protect from the progressive damage caused by an autoimmune attack,” said Jeffrey Bluestone, PhD, co-leader of the research and A.W. and Mary Clausen Distinguished Professor at UC San Francisco, who collaborated in developing the drug. 

The clinical trial was led by Kevan Herold, MD, PhD, a professor of immunobiology and deputy director for translational science at Yale University. He and Bluestone have collaborated on four previous clinical trials of the experimental drug.

“We are very excited by the efficacy of the drug,” Herold said. “Some of our patients and families have described a real impact on their diabetes.”

Bluestone, an immunologist who is now executive vice chancellor and provost at UCSF, developed teplizumab in collaboration with Ortho Pharmaceuticals in 1987. He is a leader in research that aims to understand how and why the immune system attacks the body’s own tissues and organs, and to develop drug strategies to eliminate the autoimmune response without producing severe side effects.

Catching Diabetes in Earliest Stages

The results underscore the importance of diagnosing and treating diabetes in its earliest stages, the researchers said. Current treatment studies include “pre-diabetes” patients who have abnormal blood sugar levels but do not need to take insulin.

Formerly referred to as juvenile diabetes because it disproportionately strikes children, type 1 diabetes is caused by an autoimmune condition in which the body’s immune system destroys insulin-producing beta cells in the pancreas. Even with insulin treatments, the blood glucose levels fluctuate abnormally, and as the disease progresses, diabetes increases the risk of kidney failure, heart disease and other serious disorders.

According to JDRF, as many as 3 million American have type 1 diabetes, and each year, more than 15,000 children and 15,000 adults are diagnosed with the disease in the United States. For reasons still unknown, the incidence of type 1 diabetes is increasing, and the age of onset is decreasing.

Controlling Autoimmune Reactions

Teplizumab is one of a number drugs under active investigation to control autoimmune reactions. Teplizumab uses an antibody targeted against a molecule called CD3 to bind to the immune system’s T-cells and restrain them from attacking beta cells.

Immunotherapies are designed to treat organ transplant rejection and autoimmune diseases, including multiple sclerosis, Crohn’s disease, rheumatoid arthritis and asthma. The use of these agents in type 1 diabetes is emerging based on work in preclinical models and clinical trials.

The journal’s print edition will include a commentary by Jay S. Skyler, MD, chairman of the National Institutes of Health-funded Type 1 Diabetes Trial Net, an international network of researchers that also studies teplizumab for prevention of type 1 diabetes. Skyler writes that the new results make a compelling case for U.S. Food and Drug Administration approval to launch a much larger-scale, phase 3 clinical trial of the drug’s effectiveness.

The study focused on 52 participants, most of whom were less than 14 years old, who had been diagnosed with “new-onset type 1 diabetes” within eight weeks of the trial’s start. All 52 were treated with the experimental drug for two weeks at diagnosis and again one year later, and their capacity to produce their own insulin to control their blood sugar was compared with a non-treated group.

Because the participants received daily insulin injections before and throughout the trial, researchers instead monitored their blood levels of C-peptide, a molecule produced in the pancreas at the same rate as insulin.

Watch this video to learn more about the groundbreaking work of the UCSF

Diabetes Center.

This research was a project of the Immune Tolerance Network (NIH contract #NO1 AI15416), an international clinical research consortium supported by the National Institute of Allergy and Infectious Diseases and the Juvenile Diabetes Research Foundation. It also was supported by NIH grants UL1 RR024131 and UL1 RR024139.

Co-authors on the paper and collaborators in the clinical trial with Herold and Bluestone include Stephen E. Gitelman, MD, UCSF; Mario R. Ehlers, PhD, and Peter H. Sayre, MD, of the Immune Tolerance Network (ITN), San Francisco; Peter A. Gottlieb, MD, University of Colorado;  Carla J. Greenbaum, MD, Benaroya Research Institute, Seattle; William Hagopian, MD, Pacific Northwest Diabetes Research Institute, Seattle; Karen D. Boyle, MS, and  Lynette Keyes-Elstein, DrPh, Rho Federal Systems Division, Chapel Hill; Sudeepta  Aggarawal, PhD, and Deborah Phippard, PhD, ITN, Bethesda; James McNamara, MD, National Institutes of Allergy and Infectious Diseases.

Conflict of interest statement: Jeffrey Bluestone has a patent on the teplizumab molecule. Kevan Herold has received grant support from MacroGenics, Inc., a company that owns rights to the drug.

UCSF is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care.

Wellbeing boards are 'missing a chance' to tackle diabetes

Diabetes UK said some health and wellbeing boards, which were set up under the recent NHS reforms, were risking overlooking the need to improve diabetes care.

The boards are responsible for improving the health and wellbeing for people in their regions as well as reducing health inequalities.

The charity said that the quality of policies in relation to diabetes “varied considerably” among 20 of the boards with some giving “no prominence to diabetes at all”.

The need to improve management of the condition was “often absent” from the policies, the charity said, and more than half of boards were “failing” to translate national guidance into local action.

The charity’s research suggested that many strategies did not clearly distinguish between type 1 and type 2 diabetes. Diabetes UK estimates that 3.8 million people have diabetes including 850,000 people who have type 2 diabetes but do not know it.

Bret Michaels looks great in first interview since ICU

In his first interview since being rushed to the emergency, Poison singer Bret Michaels explains his experience while suffering a brain hemorrhage. Speaking exclusively to Oprah Winfrey on her show, Bret said he knew something was “severely wrong” when he started getting a really strong headache, that was so strong, he describes it as a “migraine times 10”.

RadarOnline.com has published some excerpts of the interview, in which Bret says: “All of a sudden I just started moving around and boom there was this explosion. It went pop. They call it a thunderclap.

“I never instantly had a headache like that in my entire life. It just exploded instantly – ran from my temple down to the back of my skull.”

Nearly a month after being rushed to the intensive care unit and his long stay in hospital, Bret’s speech is remarkably good. He even managed to show off some of his sense of humor.

If he were going to die in the hospital, “leave the boots on, some form of bandana and a cape….but not in the hospital gown. If I’m going out, I want to go out rockin’,” he said.

The interview will air on Oprah’s show tomorrow.

Bret Michaels has had his share of medical woes: just 10 days before being rushed to hospital with his brain hemorrhage, Bret underwent an emergency appendectomy. Bret Michaels also suffers from type 1 diabetes. Read about Bret’s battle with type 1 diabetes.

Read our full coverage of Bret Michaels.

Images: PR Photos

Bret Michaels’ health condition worsens

Bret Michaels’ recovery process could be a long and painful one, it turns out. The Poison singer has in intensive care for nearly a week after suffering a brain hemorrhage. While doctors are continuing to test Bret to find out what is causing the bleeding, he has been given another shocking diagnosis: he has a side effect which can lead to seizures, PEOPLE reports.

A representative of Bret’s made the following statement: “Michaels remains under 24-hour observation in the ICU and is in positive spirits. He is responding well to tests and treatments. Even though today was a minor setback, doctors remain hopeful for a full recovery.”

Doctors have been able to determine the 47-year-old singer suffered a subarachnoid hemorrhage, but what caused it is still unknown.

“Many people are speculating Michaels head injury [came] from a prop striking the singer at the Tony awards last June,” RadarOnline.com quotes Bret’s representatives as writing in a statement.

“Additional studies are planned throughout the week to hopefully detect the exact cause of the rupture. Coupled with the fact that Michaels is a lifelong Type 1 diabetic and has recently undergone emergency appendectomy surgery while on tour in San Antonio, he will remain monitored closely by his medical team to make sure no complications occur from the diabetes.”

Read about Bret’s battle with type 1 diabetes.

Read our full coverage of Bret Michaels.

Other celebrities who suffer from type 1 diabetes include Nick Jonas.

Images: PR Photos

Bret Michaels remains in intensive care

While Bret Michaels remains in a critical condition in the intensive care unit, doctors are continuing to test what is causing the bleeding that has led to his brain hemorrhage. The Poison singer was rushed to emergency on Thursday night after complaining of a severe headache, like he’d been “hit in the head with a baseball bat over and over again,” a friend tells PEOPLE. According to the same source, “Bret is still in ICU. He still has the headache and is heavily sedated.”

RadarOnline.com published a statement from the singer’s official Facebook page, in which it says Bret is also suffering from blurred vision. It reads:

“Everyone at Michaels Entertainment would like to thank all fans and friends for their continued thoughts and prayers through this difficult time.

“At this point Bret remains in ICU in critical condition. He is under 24 hour doctors care and supervision. We are hopeful that further tests will locate the source of the bleeding, which has still not been located.”

Bret recently had an emergency surgery to remove his appendix. Bret also suffers from type 1 diabetes.

Read our complete coverage on Bret Michaels.

What is type 1 diabetes?

Other celebrities who suffer from type 1 diabetes include Nick Jonas.

Images: PR Photos

Bret Michaels in hospital with brain hemorrhage

Bret Michaels was rushed to a hospital after suffering a very severe headache on Thursday night. The 47-year-old singer reportedly had a massive subarachnoid hemorrhage – bleeding at the base of the brain stem.

A source told PEOPLE: “After several CAT scans, MRIs and an angiogram, [doctors] decided to keep Michaels in the ICU and are running several tests to determine the cause. [It] will be touch and go for the next few days while he is under intense observation.”

While doctors are not sure what caused Bret’s brain to start bleeding, they are sure it has something to do with complications with his type 1 diabetes. Doctors are set to continue testing, as Bret remains in the ICU, surrounded by family.

His father says Bret is doing much better, and spoke to him on the telephone. “I talked to him this morning,” Wally Sychak told RadarOnline.com. “He sounded upbeat and positive but they had him sedated. But he’s doing good. He sounded like my son.”

Just a few weeks ago Bret underwent an emergency surgery to remove his appendix after he complained of stomach pain symptoms. The star was set to perform at Sea World in San Antonio, but was rushed to hospital instead. After recovering from the surgery, Bret left the hospital and entered a facility for diabetics to recover further.

“They told me that if I had gone on stage like I wanted to, [my appendix] likely would have ruptured and I could have died,” he wrote in a note to his fans.

Read about Bret’s emergency appendectomy.

Read about Bret’s battle with type 1 diabetes.

Other celebrities who battle type 1 diabetes include Nick Jonas.

Images: PR Photos

Bret Michaels recovering in private diabetic facility

A few days after undergoing an emergency surgery to have his appendix removed, Poison singer and ‘Celebrity Apprentice’ participant Bret Michaels has been discharged from the San Antonio, Texas, hospital at which he was operated. According to reports, the 47-year-old is currently recovering at a special facility for diabetics.

A representative of Bret’s told PEOPLE in a statement: “While the surgery went well and doctors are optimistic that the rocker will make a full recovery, the fact that he was exhausted due to his rigorous schedule prior to the surgery and coupled with the fact that he has diabetes, the surgery has taken its toll.

“Even for non-diabetic patients the recovery from surgery can be long and painful. Doctors were amazed at how good of health Bret was in being a 47-year-old diabetic. However the main focus and concern right now is that he is able to rest, recover and maintain good blood sugar levels while doing so.”

It is unclear how many of the shows on his extensive tour will have to be moved while Bret recuperates and recovers in the private care facility. For now, all performances up until April 24 are being rescheduled.

Bret, who suffers from type 1 diabetes, was set to perform at Sea World in San Antonio before complaining of stomach pains and flu-like symptoms.

Read more about Bret’s battle with diabetes.

What is type 1 diabetes?

Other celebrities who suffer from type 1 diabetes include Nick Jonas.

Images: PR Photos

Bret Michaels has emergency surgery

Bret Michaels was rushed to a San Antonio hospital on Sunday night after complaining of flu-like symptoms and stomach pains, reports say. The Poison front man was then rushed into an emergency surgery at 1am on Monday morning, after doctors determined the singer and ‘Celebrity Apprentice’ contestant was suffering from acute appendicitis.

A press release, quoted by PEOPLE states that Bret “remains in hospital, is doing well and is beginning the recovery process”.

The 47-year-old will need some time to require from the operation, his rep told Us Magazine: “Michaels, who has been known to perform under extreme conditions that would make most performers cancel, will unfortunately have no choice but to reschedule some of his April tour dates.”

Bret is certainly no stranger when it comes to medical woes: he is currently a contestant on ‘Celebrity Apprentice’ for juvenile diabetes, which he was diagnosed with as a child. He is seen giving himself insulin shots every day, and reportedly checks his blood sugar levels four to six times a day. He claims he’s also been hospitalized several times because of his diabetes .

Read more about Bret Michaels’ battle with type 1 diabetes.

Find out more about type 1 diabetes.

Other celebrities who have diabetes include Nick Jonas of the Jonas Brothers.

Images: PR Photos