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There is no cookie cutter answer to how hemophilia effects peoples' lives.

There are several different things that directly impact the degree and type of effect the disorder has. The severity of the disorder, the age of the individual, the support network the individual has, the access to good doctors and treatment, and even their ability to manage stress can play a large roll in the impact. Below we'll look at a few of the more common situations.

Probably the single most noticeable impact the individual or their family will see that the common person does not see is the financial impact. The replacement therapies for treating hemophilia are very expensive (averaging over $250,000 US per year and in some cases over $1,000,000). Maintaining health insurance coverage is a must.

Older hemophiliacs tend to experience more joint damage and what is termed hemoarthritic joints. Frequent bleeding into the joints causes the body to release enzymes into those joints in order to break down and reabsorb the blood. Unfortunately, these enzymes can also break down the cartilage, causing hemoarthritis.

Older hemophiliacs may also be dealing with co-morbidities such as HIV and Hepatitis C due to contaminated blood products in the 1980s.

With the newer and safer medications that are available today most individuals with hemophilia will never experience the effects listed above, other than the financial burden. Currently;

  • There is still quite a large stigma placed on people with hemophilia.
  • For many, routine treatment (often scheduled for 3 times per week) has become the norm, taking on average 15 minutes and done at home.
  • They have to use caution when deciding what activities to participate in.
  • The financial, mental, and time related pressures tend to either bring families closer together or drive them apart altogether.
  • Siblings can often feel overlooked as parents seem to devote more time to the health and maintenance of the effected individual.

On the upside;

  • The hemophilia community has built such an extensive network of people and organizations, support is never far away.
  • With the current treatments, it is usually not obvious who has hemophilia.
  • Many of the negative situations are being addressed and Hemophilia Treatment Centers as well as the hemophilia organizations are beginning to really treat the whole family, recognizing the affects outside of just the effects on the individual.
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13y ago

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