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Stories
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Links to Information about MPD's |
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Written by Administrator
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Wednesday, 18 November 2009 |
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If you are looking for information about specific Myeloproliferative Disorders such as Essential Thrombocythemia (ET), Myelofibrosis (MF), Polycythemia Vera (PV) and Chronic Myelogenous Leukemia (CML) Please follow this link to our About Myeloproliferative Disorders Page We try to update and review these links on a six monthly basis.
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MPD Symposium webcast now available |
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Written by Administrator
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Thursday, 12 November 2009 |
The MPD Foundation, together with CR&T (Cancer Research & Treatment) Fund co-hosted the 5th MPD Patient Symposium in New York on November 4, 2009. Guest speakers included Drs. Ayalew Tefferi, Richard Silver, Ruben Mesa, Jerry Spivak, Richard Champlin, Tiziano Barbui, Srdan Versovsek and Robert Rosen from the MPD Foundation. This day long event was held at the New York Athletic Club. Attendees enjoyed a unique opportunity to engage with guest speakers from the most prestigious cancer centers and share their experiences with fellow patients. VISIT the WEBSITE |
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Travelling Overseas? Check these resources. |
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Written by Administrator
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Thursday, 13 November 2008 |
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If you are travelling overseas and are planning to take your medicine with you there are some restrictions that apply to medicines supplied by the Pharmaceutical Benefits Scheme. See information here for restrictions Australia has Reciprocal Health Care Agreements which means that as an Australian resident your are entitled to assistance with the cost of medical treatment in New Zealand, The United Kingdom, The Republic of Ireland, Sweden, The Netherlands, Finland, Italy, Belgium, Malta & Norway. SEE HERE FOR DETAILS
The Chronic Illness Alliance have produced a document as part of their Travel Insurance information. Visit their travel insurance issues website. http://www.chronicillness.org.au/workwelfarewills/travel_index.htm Also have a look at Travel Health Tips from the Australain Government SMART TRAVELLER website
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Last Updated ( Monday, 19 October 2009 )
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Asplenia: Living Without a Spleen |
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Written by Administrator
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Wednesday, 11 July 2007 |
As you may recall I joined the asplenia club in very dramatic circumstances in December 2005. I was on a train heading into the city when I felt truly awful. I spoke to the guard at Flinders Street Station and said I needed an ambulance. I thought I was having a heart attack (pain in left shoulder, shortness of breath) anyway to cut a long and dramatic story short my spleen which had become enlarged because of the Polycythemia had spontaneously ruptured. I need to add this is very rare. In fact the surgeon I spoke to afterwards had only seen 3 other spontaneous rupture in his 20 years of surgery. Many people with MPDs have their spleen removed voluntarily so I hope this information I have gleaned from a number of sources is helpful. The idea and much of the content comes from [ Weblink: Steve Dunn's Cancer Guide].
Below is an explanation of the effects of asplenia (a- means without, and -splenia means spleen) plus suggestions for people to follow if they do not have a spleen. The spleen is an organ about 5 inches long and 3 inches wide that is in the abdomen under the left rib cage. The spleen carries out a number of important functions but is not necessary for life. Thus the spleen can be removed but it takes away some of the body's functions. The most important function of the spleen is to help the body fight off infection, especially certain bacteria. If you do not have a spleen, you are at risk for infections from these bacteria. Infection growth rate can be very rapid, within hours, and may lead to death or serious impairment. For this reason it is very important that you understand how to lower your risk.
Letting your doctor know that you do not have a spleen is one of the most important things to remember about your medical history. It's a good idea to make a laminated card to keep in your wallet or purse to tell medical personnel what to watch out for. This should be presented any time you go to a medical facility for care.
Below are several recommendations:
If you have a fever of 38.0 C (100.4 degrees F) or any sign of an infection, you need to see a doctor or hospital emergency room that day. You are at risk from the infections listed below. Not all physicians are aware of all of the different organisms, so you should put this info on your laminated card. Streptococcus pneumoniae -- a common bacteria that can cause ear infections, pneumonia, meningitis, and sepsis (blood infection), Hemophilus influenzae, Neisseria meningitidis, Escherichia coli, Malaria -- important to remember when traveling outside Australia, Capnocytophaga canimorsus -- an infection associated with dog bites, Babesiosis -- a rare tick-borne infection
What about antibiotics? The data is strong enough to recommend that children should receive daily penicillin (or if allergic, erythromycin). For adults there are two options: Option 1. Antibiotic every day -- Penicillin or if allergic to penicillin, use erythromycin.
The advantage to this approach is that if you are exposed to the most common bacteria (Streptococcus pneumoniae), you are more likely to fight off the infection. A disadvantage is that you have to remember to take the antibiotic every day. Also, we do not know the long-term chance of developing a bacteria resistant to penicillin or erythromycin. Option 2. Antibiotic at the first sign of infection -- In my case I have a super anti-biotic available Sulfamethoxazole [800mg] / Trimethoprim [160mg] which I am to take at the first sign of rising temperature. You must keep a supply of antibiotics available to you at all times. If you develop an infection from Streptococcus pneumoniae, starting the antibiotic early can lower the risk of problems, though not as much as the first option. The advantage of this approach is not having to remember to take the medication each day. A problem is that people often forget where they placed the antibiotic and cannot find it when it's needed.
** It is very important to realize that you still need to see a doctor or other healthcare provider promptly for any sign of infection or fever. Wear a Medic Alert bracelet or necklace indicating that you do not have a spleen. There are a number of different styles and producta available. I use a SOS Talisman. but visit your local pharamacy to see what is available. Also there are a number of products available via the internet. Recommended vaccinations: (Please note that vaccinations do not provide complete protection! They help, but you still can have the problem they aim to prevent.) 1. Influenza (flu) vaccine each year 2. Hemophilus influenzae vaccine (Hib vaccination) 3. Meningococcal vaccine if traveling outside of the US into an area with Neisseria meningitidis 4. Pneumonia vaccine for you and family members living with you 5. If going into an area with malaria: You need to take a medication to prevent infection with malaria (depending on area of travel) and use mosquito/insect repellent with DEET. Try not to visit areas where malaria is epidemic. If you are bitten by a dog. You may become infected with Capnocytophaga canimorsus. You need to be treated with an antibiotic such as Augmentin for at least five days. If you develop a bacterial infection despite these precautions, you must receive medical treatment immediately in the hospital.
WEB REFERENCES TO CLINICAL GUIDELINES
Newcastle Upon Tyne Hospitals NHS Foundation Trust |
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Last Updated ( Monday, 19 October 2009 )
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Written by Administrator
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Thursday, 05 July 2007 |
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I recently obtained approval from Connie Luteijn, MPD Foundation Netherlands, to place this Concise Update Brochure on the MPD-Oz webite. It is a technical document and aimed at helping doctors in diagnosis. But for patients and families it gives an excellent grounding and opportunities to seek clarification and to discuss issues further with your own medical advisors. I am very grateful to our dutch colleagues for their co-operation. In her reply Connie said "First of all, congratulations on both the Australian MPD association and the MPD-Oz mailing list! Your request concerning the Doctor's Brochure was reviewed by the responsible authors of the document and the board of the MPD Foundation Netherlands. We all encourage the broadest availability of the information provided in this brochure and therefore you may feel free to place a copy of the document on your website. Good luck with the Australian MPD Association and mailing list! If we can be of any help in any way at any time, please let us know."
I want to thank the MPD Foundation Netherlands and Doctors Jan Jacques Michiels, [Goodheart Institute Rotterdam, MPD Center Europe, Department of Hematology, Antwerp University Hospital] and Hans Michael Kvasnicka and Juergen Thiele, [Institute of Pathology, University of Cologne] for making available. Chronic Ph1- Negative Myeloproliferative Disorders (MPDs): A concise update |
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Last Updated ( Saturday, 17 October 2009 )
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ABC Health News |
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