JMHSK - Dedicated to helping those who suffer from hemophilia

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FAQ - Adults

Q: I have had a lot of bleeds in the same joint recently. What is happening and what can I do to stop it?
A: It sounds as though what you have is called a "target joint". Even though you may have had the "correct" treatment for joint bleeds, almost every adult today has some degree of joint damage. Once a joint has had a bleed it may take up to six weeks for the blood to be fully re-absorbed into the system. This is when it is most likely to bleed again because as the joint is healing more blood flows to the site and so a vicious cycle is set up. The way to stop this happening, once it starts, is to have prophylactic (preventative) treatment 2-3 times weekly to keep the factor level high enough to prevent that spontaneous re-bleeding. If this treatment fails, there are some other more complicated treatment options which should be discussed with your Hemophilia specialist.

Q: How do I tell the difference between a bleed and arthritis? 
A: If you have had a lot of bleeding into a particular joint over many years, it is likely there will be a degree of arthritis there. Arthritis tends to be at its worst first thing in the morning and eases slightly as the day progresses and with movement. A bleed, even if it is not acute, gets gradually worse, more swollen and painful. If factor replacement is making no difference then it probably is arthritis. An x-ray and visit to your rheumatologist would confirm this. There are medications available for people with Hemophilia and arthritis, so consult your Hemophilia Centre.

Q: What is the shelf life of Factor VIII and IX, and how should they be stored?
A: Factor VIII and IX have a shelf life of two years. Recombinant products have a shelf life of three years. It is recommended that a close eye is kept on the expiry dates and when the product goes close to this date people should bring it into the Hemophilia Centre and it will be exchanged for fresher product. It is recommended that all products are best stored in the refrigerator, but time in normal room temperature will do no harm.

Q: Will my children inherit Hemophilia?
A: Hemophilia is an inherited condition and occurs in families. However in 1/3 of cases it appears in families with no previous history of the disorder. The gene causing Hemophilia is passed down from parent to child through generations. Men with Hemophilia will pass the gene on to their daughters but not their sons. Women who carry the gene causing Hemophilia can pass the gene on to their sons and daughters. Sons with the gene will have Hemophilia. Some women and girls who carry the gene may also experience bleeding problems.

The diagrams below may assist in understanding this. The solid red males are those with Hemophilia; the red and blue females carry the gene.

 

 

 

Q: I can't find a General Practitioner who knows anything about Hemophilia. How do I do this? 
A: This is not surprising considering there are very few people with Hemophilia in Australia. Most GPs will never meet anyone with Hemophilia unless they have worked in a hospital where there is a Hemophilia Centre of some kind. People with Hemophilia are encouraged to keep themselves as educated about current trends in Hemophilia and to find a GP who is interested enough to learn more about Hemophilia and liaise with your Hemophilia Centre regarding your care. Your GP can also be placed on a mailing list to receive regular information on Hemophilia from HFA. For people in rural areas, it is often better to establish a long-term relationship with a well-informed GP than depend upon assistance from small hospitals with rotating staff.

Q: I am having problems with my veins. What can I do? 
A: This is sometimes a problem in older people who have had many, many venepunctures over the years, made worse by the use of "cut downs" (surgical exposure) of the veins which means they cannot be used again. It also can be because of poor health, hydration, obesity or lack of muscle tone. If you have tried to take measures in all these areas and cannot find a new vein, contact your Hemophilia Centre to discuss the options of venous access devices such as a port-a-cath. This is a small box attached to a tube which is inserted under the skin and directly into a vein. It can then be readily accessed with a special needle. This does, however, have some complications so it should be discussed at length with your specialist.

Q: I have blood in my urine. How should I treat myself?
A: Blood in the urine is medically called haematuria. It is a common occurrence in some people with Hemophilia and usually seems to be for no reason at all. (In people without Hemophilia, it can be a sign of serious disorders.) A small amount of blood in the urine can look far more frightening than it actually is, but it needs to be investigated nevertheless. Sometimes the haematuria can be stopped by increasing the fluid intake to 3-4 litres per day and "flushing out" the system. If it continues, factor treatment will be required, but only do this with consultation with your Hemophilia Centre. It is also important not to take antifibrinolytic medication such as Cyclokapron or Amicar as these can cause small clots which can block the urinary tract and cause intense pain.

Q: What do I need to do if I am traveling?
A: As everyone has individual needs regarding travel, it is suggested that you contact your Hemophilia Treatment Centre a few months before departure.

  • Talk to your Hemophilia Centre beforehand if you are travelling interstate or overseas. They can help you prepare depending on your individual situation. They can also advise on documentation, medication and travel insurance
  • Discuss with your Hemophilia Centre if you need to take treatment with you
  • You may not need them, but just in case, find out the contact details of Hemophilia Centres along your route
  • Consider telling your travelling companions what to do to help you in case of an emergency
  • With airplane and overseas travel you may need further documentation to carry medication and treatment equipment through security and customs – talk to your Hemophilia Centre about this well in advance and allow plenty of time to prepare the documentation.

 

About Us


The purpose of the society is to provide service and support to persons with hemophilia or other clotting disorders and their families. Read more

Our Programs


JMHSK runs a number of programs aimed at education; support and offering affordable medical help to those living with hemophilia. Read More

 

Annual Events


17th April: We celebrate World Hemophilia Day

25th April: Family Day as it marks Jose Memorial Day

How you can help


We rely on the generous support of individuals and groups to provide services, education and support for people living with hemophilia and other bleeding disorders. Read More

 

 

 

 

 

 

 

Our Team Our Team

 

Our Vision

Healthy, active and empowered citizens living with Hemophilia

 

Our Mission

To provide comprehensive care, medical support and service to people with Hemophilia through registration, provision of treatment, education and training.

 

Our Programs

Medical Programs


One of the Society’s ultimate goals is to provide comprehensive care meaning that along with factor replacement therapy, patients receive physiotherapy, dental hygiene, genetic counselling, diagnostics, psychosocial therapy, orthopedics and surgical care. 

Organizational Programs


The society was launched on 17th April 2009 during the World Hemophilia Day (WHD) at the MP Shah Hospital to give it credibility and to create awareness on a wider scale. The media was present at the launch in an effort to inform the public of the presence and purpose of the society.

Family Programs


In Kenya, the pressure to provide basic medical care leaves families on the sidelines. Many families are reluctant and afraid to assert their needs and have thus learnt to be helpless and hopeless, and suffer in silence.

Government Lobbying


The society cannot achieve its vision of comprehensive Hemophilia care without the government’s support. Hemophilia is rare and the government faces other urgent medical needs thus our case can get lost in the many voices crying for government attention.

 

Fund Raising & Public Awareness

 

 

As public awareness on the society is raised, more people will contribute to its success. The society will endeavor to run both of these concurrently to ensure success as they are intimately related. We undertake to identify the stakeholders listed below and create linkages.

Funding source include:

  1. The government
  2. Private Individuals
  3. Corporations and Businesses
  4. The General Public

 

 

 

Useful Links

© 2018 Jose Memorial Hemophilia Society. All Rights Reserved.

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