About Type 1 Diabetes:
- What are the different types of diabetes?
- What are the symptoms of type 1 diabetes?
- What is the “honeymoon phase”?
- How long will I or my loved one have type 1 diabetes? Can you outgrow it? What is the life expectancy?
Daily Life and Management:
- What is the optimal blood glucose range?
- What foods should a person with type 1 diabetes eat/avoid?
- Are there support groups or other parents I can talk to about everyday issues?
- What do I need to know about type 1 diabetes in school?
- How do I know whether my child is getting the best medical care available? Is there a list of recommended doctors and health care experts I can check?
- Where can I get a medical ID for my child?
- Does JDRF offer resources for adults with type 1 diabetes?
- Where can I find health insurance for my child with type 1 diabetes?
- I need financial assistance for type 1 diabetes supplies and/or healthcare.
- I have type 1 diabetes and need help finding life insurance.
- Where can I find information about camps for kids with type 1 diabetes?
- Where can I find information about clinical trials?
- What’s the latest research information? Is there a cure in sight?
- How can I help find a cure?
About Type 1 Diabetes
What are the different types of diabetes?
There are a number of different types of diabetes. The two most common are type 1 diabetes (T1D) and type 2 diabetes. Other forms of diabetes include gestational diabetes, Latent Autoimmune Diabetes in Adults (LADA), and monogenic diabetes.
Type 1 diabetes (T1D, insulin-dependent or juvenile) can occur at any age, but most commonly is diagnosed from infancy to the late 30s. With T1D, a person’s pancreas produces little or no insulin. Although the causes are not entirely known, scientists believe the body’s own defense system (the immune system) attacks and destroys the insulin-producing cells in the pancreas. People with T1D must inject insulin several times every day or continually infuse insulin through a pump.
While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and — at present — nothing you can do to get rid of it.
Type 2 diabetes (T2D, non-insulin-dependent or adult-onset) Type 2 diabetes typically develops after age 40, but can appear earlier, and has recently begun to appear with more frequency in children. In this form of diabetes, the pancreas still produces insulin, but the body does not produce enough or is not able to use it effectively. Treatment includes diet control, exercise, self-monitoring of blood glucose and, in some cases, oral drugs or insulin.
Gestational Diabetes About 2-10 percent of pregnant women develop high blood glucose during pregnancy. Although this type of diabetes usually disappears after the birth of the baby, women who have had gestational diabetes are at high risk of developing T2D later in life.
Latent Autoimmune Diabetes in Adults (LADA) T1D diagnosed in adults over 30 may be Latent Autoimmune Diabetes in Adults, sometimes known as type 1.5 diabetes. LADA is often misdiagnosed as T2D because of age, however people with LADA do not have insulin resistance like those with T2D. LADA is characterized by age, a gradual increase in insulin necessity, positive antibodies, low C-peptide, lack of family history of T2D, and insulin-resistance medications being ineffective. Treatment for LADA is the same as for T1D.
Monogenic Diabetes Monogenic forms of diabetes may account for 1-2 percent of all cases of diabetes in young people. In some cases of monogenic diabetes, the gene mutation is inherited; but in others, the gene mutation develops spontaneously. Most mutations in monogenic diabetes reduce the body’s ability to produce insulin, a protein produced in the pancreas that is essential for the body to make glucose for energy. As a result, monogenic diabetes can easily be mistaken for T1D. Different types of monogenic diabetes include neonatal diabetes and maturity onset diabetes of the young (MODY).
What are the symptoms of type 1 diabetes?
The symptoms may occur suddenly, and include one or more of the following:
- Extreme thirst
- Frequent urination
- Drowsiness, lethargy
- Sugar in urine
- Sudden vision changes
- Increased appetite
- Sudden weight loss
- Fruity, sweet, or wine-like odor on breath
- Heavy, labored breathing
- Stupor, unconsciousness
If you think you or your child has diabetes, call a doctor immediately, and drink fluids WITHOUT SUGAR, if able to swallow, to prevent dehydration.
What is the “honeymoon phase”?
In a person who has type 1 diabetes (T1D), immune cells destroy the insulin-producing beta cells in the pancreas. However, right after the time of diagnosis, some people go through a “honeymoon phase” in which their existing beta cells still function and the body is able to produce its own insulin. Halting the autoimmune response in people with new onset T1D and those who are at risk is one of the chief areas of research JDRF is focused on. JDRF funds a number of efforts to curb the progression of T1D in newly diagnosed individuals. A number of research projects funded by JDRF have shown promise in preserving the function of these existing beta cells in people with T1D past the honeymoon phase.
How long will I or my loved one have type 1 diabetes? Can you outgrow it? What is the life expectancy?
At this point, type 1 diabetes (T1D) is a chronic disease, meaning you never outgrow it. However, JDRF has a strategic research plan to end T1D. Our plan ensures that there will be an ongoing stream of life-changing therapies moving from development through to commercialization that lessen the impact of T1D. We want to keep people with T1D healthy and safe today until we reach our ultimate goal of a cure and universal prevention of T1D.
Although you can never outgrow T1D, treatment options are improving all the time, and people with T1D can lead full and active lives. JDRF is driving research to improve the technology people with diabetes use to monitor blood-glucose levels and deliver proper doses of insulin. As new tools and technologies are developed to treat T1D, people with T1D achieve tighter glucose control and life expectancy significantly improves. In the meantime, one of the best things you can do is listen and learn from the experiences of others while also responding to your loved one’s individual needs or tending to your own. Avoid blaming yourself or your child when things don’t go smoothly. The reality is T1D is a difficult disease to manage, but we have come a long way and the technology is getting better all the time. Take advantage of the people, products, and other resources available to you.
Daily Life and Management
What is the optimal blood glucose range?
You should check with your doctor to determine the range of blood-glucose levels best for the person with T1D. In general, optimal blood-glucose goals are:
Before Meals: 70–110 mg/dL
At Bedtime: 100–140 mg/dL
If your before-meals blood glucose is consistently lower than 70 mg/dL or higher than 140 mg/dL, or your bedtime blood glucose is consistently lower than 100 mg/dL or higher than 160 mg/dL, you probably need a change in your treatment plan and should consult your doctor. blood glucose goals may be modified for children and others who are at greater risk for hypoglycemia.
What foods should a person with type 1 diabetes eat/avoid?
People with type 1 diabetes (T1D) should discuss their individual dietary needs with their doctor. Individualized meal planning is an integral part of every diabetes care plan. The key to every plan is balancing diet, exercise, and insulin intake to achieve blood-glucose levels as close to normal as possible. It’s important that anyone new to T1D develop strategies for eating out and controlling portions, and that they understand how to read and comprehend food labels
The JDRF website features information about diabetes and diet along with additional resources.
JDRF’s social network, TypeOneNation.org, has a special Diet and Nutrition group and a Recipe Swap group. These groups are a good place to post some meal planning questions and share recipe ideas with our online T1D community.
For more information on nutrition and diabetes, the National Diabetes Information Clearinghouse has a series of publications titled the Diabetes Nutrition Series. These publications may be viewed online or ordered by calling 800-860-8747.
Are there support groups or other parents I can talk to about everyday issues?
Yes. JDRF has many compassionate, understanding, and dedicated volunteers who have been through many of the things you are experiencing and are more than happy to help you. Our Online Diabetes Support Team is made up of such volunteers. In addition, your local JDRF chapter can tell you about support groups in your local community that meet on a regular basis. Additionally, you also might want to join TypeOneNation, JDRF’s online community for people touched by T1D. TypeOneNation features blogs, discussion boards, forums, and other interactive resources on various topics related to living with T1D.
What do I need to know about type 1 diabetes in school?
School presents a host of challenging issues for children with type 1 diabetes (T1D), and it’s important to know how to work with the school to ensure the best care for your child. The JDRF School Advisory Toolkit is a comprehensive resource for parents, teachers, nurses, and everyone who provides care for a child with T1D in school. It was written and compiled by JDRF volunteers with a direct T1D connection, and reflects their personal experiences. JDRF’s Back-to-School Webcast also discusses information on setting up 504 plans and other topics found in the JDRF School Advisory Toolkit. Additional information, articles, and links about caring for a child with diabetes in school can be found on our T1D in School page.
How do I know if my child is getting the best medical care available? Is there a list of recommended doctors and healthcare experts I can check?
Ultimately only you can determine whether or not you or your loved one is seeing the right doctor, but we offer general guidelines to help you make that determination. On your next visit to your doctor, you may want to ask some or all of the following questions to determine his or her level of expertise with type 1 diabetes (T1D) management. If you don’t feel comfortable with your doctor and have difficulty engaging in dialogue with him or her, it is probably best for you to seek alternate care.
Questions for your doctor:
- How many patients with T1D do you care for in your practice?
- Are you familiar with the Diabetes Control and Complications Trial?
- Do you work with a T1D nurse educator?
- Do you work with a dietitian knowledgeable about T1D?
- Do you work with an eye doctor knowledgeable about diagnosing and treating eye problems related to T1D?
- Do you have any experience with insulin pumps or continuous glucose monitors?
- Is someone available 24 hours a day to help me manage problems with my T1D? How do I contact that person?
You can also ask other people with T1D or parents of children with T1D in your area whom they recommend. Most people with diabetes are treated by an endocrinologist along with their regular physician. The American Association of Clinical Endocrinologists (AACE) website is an excellent resource for T1D care information and has a link to search for endocrinologists by state. You can identify pediatric endocrinologists in your area through the search engine of the Pediatric Endocrine Society.
Finally, you may also want to contact your local JDRF chapter, which may know of some medical facilities in the area. You can find contact information for your chapter on the JDRF website.
Where can I get a medical ID for my child?
A number of companies make medical alert bracelets specifically marketed toward children with T1D. The Children with Diabetes website has a comprehensive listing of medical ID products.
In addition, you may want to ask your doctor if they dispense medical ID bracelets or know of any local pharmacies that can provide you (your child) with one.
Does JDRF offer resources for adults with type 1 diabetes?
JDRF appreciates the need for resources and support among members of the adult type 1 diabetes (T1D) community. JDRF is active in research that benefits people with T1D at all ages and all stages of the disease, with special programs geared to both children and adults.
The JDRF website features a special page in the “Life with T1D” section with materials and articles for adults. In this section of the web site, you can download the Adult Type 1 Toolkit, a comprehensive free guidebook that contains important information and insight for adults, including information specific to newly diagnosed adults with T1D.
Another great resource for adults with T1D is the JDRF online community for people touched byT1D, TypeOneNation.org. TypeOneNation features blogs, discussion boards, forums, and other interactive resources on various topics related to living with T1D.
JDRF also has support groups and other activities geared to adults living with T1D. More information about participating in your area is available from your local JDRF chapter. You can find contact information for your chapter here.
Where can I find health insurance for myself or my child with type 1 diabetes?
The federal government site, Healthcare.gov, has information about health insurance options as well as an easy-to-use guide to help you find out which private insurance plans, public programs and community services are available to you or your child. Also, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) has a publication “Financial Help for Diabetes Care.” Every state in the nation has a health insurance program for infants, children, and teens who are not otherwise insured. To find out about programs in your state, search Insure Kids Now!, offered by the U.S. Department of Health & Human Services (or call 877-KIDS-NOW). Another option to investigate is your state’s Children’s Health Insurance Program (CHIP).
Many states now require insurance companies to cover diabetes supplies and education. The Health Insurance Portability Act passed by Congress in 1996 limits insurance companies from denying coverage because of a preexisting condition. To find out more about these laws, contact your state insurance regulatory office.
You may also try contacting your county or town health department. It’s possible that there are local resources that don’t exist on a statewide or national level.
I need financial assistance for type 1 diabetes supplies and/or healthcare.
There are pharmaceutical assistance programs offered directly by some drug companies for people with T1D who have little or no insurance to help offset the cost of supplies or prescription medications. The Partnership for Prescription Assistance (888-477-2669) offers a point of access to hundreds of assistance programs that have joined together to provide savings to the uninsured.
The Together Rx Access Card (800-444-4106) offers 25-40 percent off brand-name prescription medications at pharmacies nationwide. Needy Meds is a nonprofit organization that provides information about patient assistance programs to help people who cannot afford medicine or healthcare costs. It provides a database of clinics that offer healthcare at no cost, for a small fee, or on a sliding scale.
A number of national drug store and pharmacy chains also have their own prescription programs to help customers save money on certain medications. Stores with these programs include Costco, CVS, K-mart, Rite Aid, Target, Walmart, and others. Speak with your pharmacist at any of these stores for details.
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) also has a publication called “Financial Help for Diabetes Care,” which offers information about resources that may help with medical expenses of a person with diabetes.
I have type 1 diabetes and need help finding life insurance.
People with type 1 diabetes (T1D) may encounter difficulties obtaining life insurance. It may be necessary to do some individual research to find a company that will provide you with a policy. While JDRF does not keep lists of companies that offer life insurance to people with T1D, we can offer some direction to help you start your research into finding a policy.
An online search engine is a good place to begin your research. If you do a web search using terms such as “diabetic life insurance,” you should find companies that will provide coverage. JDRF cannot vouch for any of the companies that you may find in this manner, however, so we strongly recommend you investigate them thoroughly.
- The American Diabetes Association has information about obtaining life insurance for people with T1D.
- You can get in touch with your state’s insurance regulatory office to see if it has any recommendations.
Where can I find information about camps for kids with type 1 diabetes?
There are a number of great summer camps throughout the country especially for children with diabetes. You can search state-by-state listings of diabetes camps on a number of websites:
Additionally, financial assistance to cover camp costs may be available through the camp itself.
Where can I find information about clinical trials?
The JDRF Type 1 Diabetes Clinical Trials Connection provides people affected by type 1 diabetes (T1D) and its complications with up-to-date information on clinical trial participation opportunities.
Clinical Trials Connection is an online service that allows you to “opt in” to get information about trials and access to them. It contains information about all currently active T1D trials in the U.S. Based on the criteria you choose, the connection provides you with information about selected trials and how to contact the researchers conducting them. You can also choose to receive regular updates so that you’ll know when new trials that meet your criteria become available. If you find a trial that interests you, you can discuss it with your doctor and also contact the trial’s primary investigator with any questions or concerns.
What’s the latest research information? Is there a cure in sight?
This is the question JDRF is best equipped to answer, as the leading global organization focused on type 1 diabetes (T1D) research. Driven by passionate, grassroots volunteers connected to children, adolescents, and adults with this disease, JDRF is the largest charitable supporter of T1D research. JDRF is the only global organization with a strategic research plan to end T1D. Our plan ensures that there will be an ongoing stream of life-changing therapies moving from development through to commercialization that lessen the impact of T1D. We want to keep people with T1D healthy and safe today until we reach our ultimate goal of a cure and universal prevention of T1D. JDRF collaborates with a wide spectrum of partners who share this goal.
As the largest charitable supporter of T1D research, JDRF funds new T1D research each year and is currently sponsoring $568 million in scientific research in 17 countries. Past JDRF efforts have helped to significantly advance the care of people with this disease, and have expanded the critical scientific understanding of T1D. JDRF will not rest until T1D is fully conquered.
As our research programs and therapies move through the pipeline, new treatments will progressively remove the daily burden, side effects, and complications. The outcome will be a flow of therapies that restores glycemic control on the way to our ultimate goal of restoring normal physiology.
JDRF produces regular research updates to help keep you informed on the latest progress in T1D research. Please review the Research pages on JDRF.org and visit our newsroom. These resources are updated frequently.
How can I help find a cure?
The best ways are by making a donation or volunteering with JDRF. The goal of JDRF research is to improve the lives of every person affected by type 1 diabetes (T1D) by accelerating progress on the most promising opportunities. JDRF has many wonderful opportunities for volunteers. Events such as the JDRF Walk, JDRF Ride, Team JDRF, Galas and other fundraisers are great ways to meet other families dealing with T1D and forge bonds that will last a lifetime. In addition to fundraising, JDRF volunteers also invest time in our grassroots advocacy initiatives, such as Children’s Congress and the Promise to Remember Me Campaign. While JDRF is the world’s leading charitable funder of T1D research, we also advocate for federal support of T1D research, in order to ensure that sufficient funds will be available to support the critical human clinical trials needed to ultimately cure T1D.
Why did JDRF change its name?
JDRF, founded in 1970, JDRF was formerly known as the Juvenile Diabetes Research Foundation. Today, 85 percent of people living with T1D are not juveniles, they are adults. As a result the word “juvenile” is no longer descriptive of T1D or of the people and families living with the disease. Therefore, we dropped the name “Juvenile Diabetes Research Foundation” and are now known simply as JDRF. This better reflects our commitment to working with all ages and all stages of T1D, transforming lives both today and tomorrow. The brand section of the JDRF website contains more information on our name change and brand identity.