Little Marina’s family got the shocking CML diagnosis of their daughter when she was only 2 years old, in the year 2003. It all came out so unexpectedly, when her parents took the little girl to the doctor for the regular check-up. The WBS Count showed a threatening figure of 110,000.
The only treatment that existed at that time was hydrea. We heard about the existence if Imatinib though, however unfortunately it was not available in the country. The drug was too expensive for us to buy from abroad. Luckily we could get Imatinib later when it was approved by the government in the li...
12 year old Fidan is suffering from Chronic Myeloid Leukemia since she is 5. As she never had access to any TKIs she started to get chemotherapy since she was diagnosed.
As if this was not enough, 2 years later her mother got another shocking news when she started feeling strange. This was a breast cancer. Instead of spending more time with her only child and worrying about her, she had to start caring about herself too, for both of them. There were two of them now against two cancers.
Mother and daughter are travelling to Iran very often for the chemotherapy procedures. Mot...
Life for me is a battle. A 7-year old girl who is supposed to enjoy the gift of life, youth and innocence, procured a sickness nobody would ever dreamed of.
My illness was discovered during my elementary school years. At first, my health “seems” fine. But when I reached Grade 4, I was in trouble. It was just a sudden change in my health, loss of appetite, I easily got tired, I got pale and physically weak.
Since then, I started taking 8 different oral medications and it’s like I’ve been taking different colored candies all my life with awful tastes! Then I stopped schooling,...
Max was 14 when he was diagnosed with chronic myeloid leukemia (CML). A lingering cough and a doctor's check up revealed an enlarged spleen; from there, blood tests, more tests, shock. It was August of 1989.
Max went on to take hydrea and then a very promising drug at the time, Interferon, all the while we searched for a matching bone marrow donor. He did well on interferon and had little side effects. He was 15 by then and he would prepare his own interferon shots. Shots and blood draws soon became part of his routine.
Max lived with CML for almost 3 y...
This is all too sudden, my eyesight cloudy from the tears constantly flowing, it pains me deeply just to write this e-mail...
My youngest son just turned 9 years old. Tragically, on the day of his birthday, my wife who was cradling him, noticed that his stomach was way too ...
Junior CML News: News on pediatric CML
Social media networks offer patients, survivors, relatives and friends the means to connect with others, share information, experiences and insights, explore fears, identify resources, find support, and generate better informed decisions. They provide empowerment to the cancer patient community. Chronic Myeloid Leukemia is a rare cancer which affects only 1,5 in 100.000 population. Because of the low incidence, very often local support groups do not exist and existing groups are often under-resourced. This is why the Internet, and networking across country borders, has become key in empowering patient advocates, exchanging information and best practice between the groups, and start collaboration across languages and countries. The CML Advocates Network is a unique global platform of 51 patient groups from 43 countries that allows CML patient support groups to share best practice and information as well as build alliances on different topics.
"The patient groups support each other on issues like access to treatment, monitoring, information and more. The top feature of the platform is the best practice sharing among CML groups from different parts of the world. The key issue is getting the networking between groups going, not a one-to-many platform where a small number of people communicate to the audience", said Giora Sharf, who received the award at the World Cancer Congress on behalf of the CML Advocates Network.Â
Even though CML Advocates Network was founded before "Social Media" became fashionable, the Network already carried many features of social media in its member-only area from the start: a discussion forum, a Wiki (wikipedia-style collaborative tools), a flickr-like photo album where patient representatives can upload and comment to photos from patient meetings, and a shared filespace where all members can upload and download e.g. conference presentations or patient information material.
The network is accessed frequently by representatives of patient organisations. For example, the report from medical conferences like ASH (American Society of Hematology Annual Meeting) 2008 has been viewed 2660 times, the report from the "New Horizons conference 2009" 3170 times, or the "Baveno CML Declaration" 1811 times since they were put online.The prize of 4.000 EUR will be used to extend that social media functionality of the member-only area, and to make the community platform more visual and accessible. It will implement a Facebook-like functionality to give patient advocates the possibility to build personal profiles, and will allow them toÂ share news from their organisation on their profile's "wall" and set up ad-hoc discussion groups. A Twitter feed provided by the CML Advocates Network will allow people to "follow" the network and to be proactively delivered with news from the community. The wiki will be rebuilt and made more accessible , and the CML Patient Group Directory will be made more visual. An update of the 2007 platform and implementation of the new functionality will start soon, thanks to ESO and the Cancer on Internet award.
During the award ceremony, ESO furthermore announced that the quality of the information and service provided to the Greek Community by Be Strong www.bestrong.org.gr deserved recognition and the platform was awarded the Mention of Honour 2010. Be Strong offers detailed information on cancer treatment and psychological aspects, provides support also through a phone line, and offers the opportunity to communicate with other patients and relatives besides experts in the field. The future development of the platform includes the translation of the website to serve a broader and more international community.
The CML Advocates Network would like to warmly thank the European School of Oncology (ESO) for giving the 2010 award to the CML Advocates Network!
>> See also some more photos from the award ceremony (members only).