10 Things Every Adult Should Know

Step Out—Welcome to Adult Independence

This Steps for Living section is designed as a resource to enhance your knowledge about living longer and healthier with a bleeding disorder.

Step Out covers a wide age range and breadth of content. Whether you’re 26, 46, or 76, Step Out has something that will relate to you and your life. Topics include the Workplace, Finances and End of Life Planning, Treatment, Health, and Sexual and Reproductive Issues. To refresh your knowledge of bleeding disorders, you may find visiting The Basics of Bleeding Disorders, First Step, Next Step, and Step Up sections helpful.

While Step Out provides a rich overview of many topics, you should consult your medical team with any questions or concerns you have about your health or personal life. The importance of your medical team, both your Hemophilia Treatment Center (HTC) and your Primary Care Provider (PCP), cannot be stressed enough.

For some of you, it may be difficult to read about the topics addressed in this section of Steps for Living or to talk about them with loved ones and even medical professionals.

To help you better understand some of these sensitive topics, here are several terms used that have gained popularity in recent years:

• The word psychosocial is a term used to describe an individual's psychological development across his or her life span and, in particular, the person's involvement with his or her social environment. There is an emotional impact from living with a bleeding disorder, as you may have to adjust your aspirations, lifestyle, and employment. It’s possible that thinking about and processing the material in Step Out will have psychosocial ramifications for you.
• Quality of life is a general concept that usually includes subjective evaluations of both positive and negative aspects of life.

We realize that this content covers various psychosocial dimensions. These are very personal aspects, so as you read through the Step Out content, understand that it’s okay and perfectly normal to feel a strong personal connection to some of it. This personal connection could lead to inexplicable feelings of anxiety and stress, sorrow or anger, happiness or satisfaction. While it can be difficult, addressing sensitive topics can ultimately improve your own and your loved ones’ quality of life.

Ten Things Every Adult With a Bleeding Disorder Should Know

1. A bleeding disorder can cause myriad emotions throughout the various stages of life. You may have to adjust your aspirations about lifestyle and employment. It’s natural to have strong feelings about the impact your bleeding disorder has on you and your loved ones as you age. Take time to ask for help as you work through these feelings.
2. Staying active, making healthy choices, and getting regular medical screenings to detect illness at an earlier, potentially more treatable stage are all measures to help you live a long, happy, and productive life.
3. Regardless of your particular type of bleeding disorder and its treatment, adhering to the management plan is a big part of success. If you don’t stick to the plan, you run the risk of complications. For example, in the case of hemophilia, you may develop permanent joint damage from bleeds into your joints; in the case of von Willebrand disease, you may develop anemia from heavy menstrual bleeding.
4. Many of the health concerns you may face as you get older are similar to those that people without bleeding disorders must address. However, you need to be aware that your bleeding disorder may impact those health concerns in ways that may be different from people without a bleeding disorder. Work with your primary care provider and Hemophilia Treatment Center team to help keep on top of these health concerns and to understand how your bleeding disorder may influence their development or treatment.
5. Healthy sexual relationships are an important part of life. To maintain this aspect of your life, it’s important to focus on your overall health. Your bleeding disorder need not prevent you from preserving your sexual health as you age. Speak with your health care professional on how to best manage concerns related to your bleeding disorder, such as heavy periods or HIV.
6. Physical limitations may occur as a part of aging or as a result of complications from a bleeding disorder. As you get older, you may lose mobility and dexterity. Be prepared for such limitations by planning early to adjust your living environment.
7. Regardless of where you are in your working life, your career should ideally be satisfying, allowing you to feel you’re making a meaningful contribution in your chosen profession. It is also important to work in a profession that supports your health and your health care rights as an individual with a bleeding disorder.
8. People with bleeding disorders are living longer. It’s important to have a primary care provider who will coordinate care of your health conditions related to or apart from your bleeding disorder and refer you to any necessary specialized health care providers.
9. Caring for your financial well being may be as important as caring for your health. Building savings, making smart decisions about investments and spending, and protecting yourself against financial catastrophes are essential for everyone. This is especially true for individuals with bleeding disorders because health care costs can be a huge financial strain.
10. Considering where and how you’d like to live when you get older may seem a long way off, but planning can never start too early. Doing some preparation now can reduce stress on you and on your family later, increase satisfaction with your choices for living arrangements, relieve some worries about your health care, and help maximize your overall quality of life.