How can a patient association help you?
Your time is not the same as that of the patient. You are confronted with bursting activity, pressing demands, and constant management constraint. Not to mention the upgrading of knowledge, participation in various meetings, follow-up of files, etc. That means your time is running out.
Patient's time is that of the slow understanding of the illness, anxious interrogation, trial and error, rage and sometimes resignation.
A patient organization can help you to empathize with your patients, address their demands that sometimes go beyond your job and manage your patient's and patient's time.
We make validated and understandable information available to people affected by CLL or WM, based on real-life situations, and provide them advice for daily life. We offer them a forum where they can express their expectations and find an echo, a comfort to their apprehensions.
We do not replace the patient/doctor relationship. We wish to contribute to a better dialogue and to a global care because the patient is the main actor of the smooth running of treatment. Indeed, we consider that every sick person has the right to know, to understand, to participate actively in the improvement of his / her own health.
A better understanding of the disease, of the nature and usefulness of investigations, of why, where and how the proposed treatment (s) will be carried out, explain that physicians and qualified teams have a diagnostic and therapeutic approach adapted to the particular characteristics of the disease. Disease and the data of science: these are our objectives so that the patient participates with discernment and confidence in the fight against disease.
In practice, SILLC runs a very busy website (www.sillc-asso.org) (3500 visits and 25000 pages / month), where people concerned by the CLL or WM can find information about diagnostic and therapeutic steps, practical hints for daily life or for social, insurance and banking organizations.
In addition to this information, the website also offers short news, testimonials and a forum that can answer the questions asked by people suffering from these pathologies. In addition, SILLC provides patients with information brochures for personal dissemination of through institutional ERI (Espace Rencontres Information) and a Newsletter.
An extensive DVD has also been produced on the pathophysiology and clinic of CLL and WM (offered to any new member) as well as a film focusing on the biology of the CLL.
Finally, with the help of interested hematologists, regional information meetings on these diseases are organized. The association is thus an auxiliary to allow sending messages to patients and advice of general interest.