Your time is not the same as that of the patient. You are confronted with a fast pace of activity, a pressing demand, a sustained pace, and a 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.
The patient's time is that of the slow understanding of the arcana of his illness, anxious interrogations, trial and error, rage and sometimes resignation.
A patient organization can help you, empathize with your patients, and help you respond to their demands that sometimes go beyond your job and help you manage your patient's and your patient's time.
We make validated and understandable information available to people affected by the LLC and the WM, based on our real-life situations, and give them advice for their daily lives. 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 relationship between the patient and his doctor. 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 the 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, understanding the nature and usefulness of the examinations envisaged, 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 his disease.
In practice, SILLC runs a very busy website (www.sillc-asso.org) (3500 visits and 25000 pages / month), where people concerned by the LLC and the WM can find information about the diagnostic and therapeutic steps , Practical indications for everyday life or for social, insurance and banking organizations.
In addition to this information, the site also offers short news stories, testimonials and a forum that can answer the questions posed by people suffering from these pathologies. In addition, SILLC provides patients with information brochures to disseminate by yourself or the ERI of your institution and a Newsletter.
We also produced an Extension DVD on the pathophysiology and clinic of LLC and WM (offered to any new member) as well as a film focusing on the biology of the LLC.
Finally, with the help of interested hematologists, we organize regional information meetings on these diseases. The association is thus your auxiliary to allow you to send to the patients messages and advice of general interest.