The cancer warrior
Elva was diagnosed with Ewing Sarcoma, a highly malignant and agressive form of cancer, in February 2022. She battled the Ewing monster with bravery, an immense and almost heavenly grace and she never gave up hope. Even when her entire body was almost paralyzed she still smiled and gave other people endless love and attention and said that everything would be alright. The cancer however was unbeatable and Elva got her angel wings on October 1st 2022.
About Ewing Sarcoma
Ewing sarcoma is an extremely rare cancer which primarely affects young children and young adults. These are some of the sites which we used the most to obtain relevant information about Elva´s disease and to guide our questions for her MDs. We recommend to start looking for potential clinical trials at the moment of diagnosis as access to these can be difficult to obtain and in some countries you need to go through alot of red tape and even lead the process yourself. Furthermore you might find important knowledge and support in the various communities on Facebook.
Rarediseases.org
Rarediseases.org or NORD has a good overview article about Ewing Sarcoma including signs & symptoms, causes and potential treatments.
Clinicaltrials.org
Clinicaltrials.org gives an overview over all studies receiving U.S. government funding, and some supported by private industry,
PubMed
PubMed® comprises more than 34 million citations for biomedical literature from MEDLINE, life science journals, and online books.
Support
When Elva was sick we enjoyed support from both the Icelandic and Danish Cancer Soceities and we would kindly point your attention to these two organisations if you would like to support the fight against cancer
Challenged getting diagnosed?
Many patients who are diagnosed with Ewing Sarcoma are diagnosed at a very late stage just like Elva making the odds of beating it much harder. Many are told that they are hysteric, have sports injuries and are not taken seriously by their MDs. If you are based in Denmark and think your MDs have made a mistake and delayed you diagnosis please feel free to reach out. We might be able to help you file a complaint and obtain compensation.