Rocky Mountain Hemophilia & Bleeding Disorders Association

RMHBDA has several terrific programs for members of the bleeding disorder community and their family and friends. See below for details.

Family Camp

Each summer, the RMHBDA invites affected families living in Montana and Wyoming to attend a weekend retreat. The weekend is packed full of education, bonding, and fun!

This year Family Camp will be held June 24-26, 2011 at Livingston KOA Campground, located south of Livingston MT and several miles north of the north entrance to Yellowstone Park. The camp is in the Paradise Valley near the Yellowstone River. To see a picture, go to their website at http://koa.com/campgrounds/livingston/

Call Ann with any questions at (406) 579-3754.

Education Day

Each year the RMHBDA hosts an Education Day Conference. The purposes of the weekend include bringing families and affected persons together to learn about cutting edge information on hemophilia and other bleeding disorders, as well as a time for networking and peer support. Topics in the past have included updates on recent clinical trials and research, transitions, infusion, health care and insurance, advocacy skills, and information about the National Hemophilia Foundation. 

Young children and youth have separate programs. In the past these programs included rock climbing, skiing, and visiting the Bozeman Children’s Museum.

Woman to Woman

It's a myth that women cannot have a bleeding disorder! Signs and symptoms of a bleeding disorder include:

• Heavy menstrual periods
• Excessive nosebleeds
• Easy bruising
• Bleeding gums
• Heavy bleeding following dental work, surgery, injury, or childbirth
• A family member with these symptoms or a bleeding disorder such as hemophilia or von Willebrand disease

Women with untreated bleeding disorders face serious, yet unnecessary, risks following childbirth, surgery, dental procedures, and injury.

Most bleeding disorders are easily treated, improving both your health and quality of life.

Patient Assistance

RMHBDA has a fund set aside to assist people and their families with expenses like medical alert bracelet(s)/membership; mileage for medical travel; hotel for medical travel; food for medical travel; and other requests approved by the Board of Directors. For more information, please follow the links below to the criteria and application form.

• Patient Assistance Criteria
• Patient Assistance Form

Patient Notification

The Patient Notification System is a free, confidential, 24-hour communication system providing information on plasma-derived and recombinant analog therapy (factor) withdrawals and recalls.  Consumers can also call its 24-hour, toll-free number:

 1-888.UPDATE (1.888.873.2838).

Fitness and Health

You can prevent or reduce many of the complications of bleeding disorders thanks to medical advances in treatment and prevention. Do the "5" and live a longer and healthier life:

1. Get an annual comprehensive checkup at a hemophilia treatment center: Hemophilia treatement centers offer comprehensive one-stop services for testing and care. A Centers for Disease Control and Prevention study found that people who receive care in HTCs lived longer and were less likely to be hospitalized for bleeding complications than those who did not.
2. Get vaccinated - Hepatitis A and B are preventable: Get vaccinations and information at a hemophilia treatment center.
3. Treat bleeds early and adequately: Be prepared. Recognize a bleed and seek treatment quickly.
4. Exercise and maintain a healthy weight to protect your joints: Exercise strengthens your muscles, and strong muscles protect your joints. A CDC study recently found that people who were overweight were more likely to have joint limitations regardless of the severity of the bleeding disorder.
5. Get tested regularly for blood-borne infections: Know your test results. It matters to you and to your family.

Emergency Preparedness

• Wear a medical alert bracelet or necklace.

• Place multiple ice packs in the freezer.

• Always have, in the same place, enough cash/change for parking at HTC/hospital or cab/bus/subway fare to get you to the HTC or ER.

• Always take factor and supplies with you when you leave home.

• Fill our and regularly update the NHF Readiness card for each family member with emergency contact information, important phone numbers, diagnosis, prescription information, etc. NHF Readiness cards can be requested through HANDI (800-424-2634).

• Keep important phone numbers (HTC, homecare company, physicians, insurance, ER, etc.) in multiple locations: on fridge, in wallet, on child's car seat, in school bags/work bags/go-bag, with your health care insurance papers, etc.

• Keep as much factor and supplies on hand as your insurance will allow.

• Teach extended family and friends how to infuse, as circumstances may require others to infuse the patient.

• Keep a family manual--a reference notebook with pertinent medical information, directions on mixing and infusing factor, maps of the area for the HTC/hospital, important phone numbers, diagnosis and treatment regimens, location of back-up HTC, etc.

• Keep an infusion log and take it with you in case there is a need for evacuation.

• Keep a go-bag/small suitcase of factor and supplies packed at all times so it is easy to grab and go: make sure you take supplies on a regular basis in line with expiration dates.

• Program your emergency contact into your phone under "ICE" (In Case of Emergency). EMS responders now look for it in cell phones and call that number if needed.

• Program 800-424-2634 (HANDI) into your phone in case you need information on available HTCs and chapter services in areas to which you may have to evacuate.

• Contact your local emergency management office or public health department for information on sheltering-in-place  and other safety procedures for your area.

Transition: Steps to Independence and Self-Care

• Know signs and symptoms of a bleed

• Ask for help from adult when appropriate

• Wear a medic alert bracelet or necklace all the time

• Know type of disorder they have, ie. Hemophila A, clotting factor that is deficient and medicine they are taking.

• Know what to do when having a bleed:  ice, rest, factor, tell adult, elevate

• Know what sports and activities to avoid and participate in

• Mix factor

• Order factor, know what kind and from who

• Keep records of bleeds

• Self-infuse

• Know what questions to ask of their medical care provider

• Meet with medical care provider by themselves

• Know the name and contact info for their medical care provider

• Make appointments with the HTC or treating physician

• Follow through on physical therapy and excercise prescriptions

• Participate in appropriate activities

• Know genetics and outcome for next generations

• Know about safer sex choices

• Understand and deal with the psychological affects of the disorder, i.e. depression, grief, loss, anger

• Understand nuances of career path choices

• Understand effect of disorder on finances and health insurance

• Know travel needs

Family Camp, Luccock Park 2009
Campfire time 2009