Imagine that you cannot cuddle your child, grandchild or other loved ones.
Imagine that the doctor has just informed you that you would only have two or three years of your life left.
Imagine that during that time you can do nothing but observe the paralysis gradually taking control over your body.
Now imagine that not only do you have to flight with death and incurable disease, but also with an inefficient health care system. In spite of the fact that you have regularly paid high health insurance premiums, you will have to wait up to 6 months for the first visit to your neurologist who is likely not to know the name of the disease that you suffer from. Hence, you will have to wait about a year, petrified and unsure about your future, to be diagnosed. During that period of time you will spend enormous sums of money on private care due to the fact that the service rendered by NHS is not fully accessible. If you decide to pass away at home, it is very likely that you will not receive proper medical care, but should you be admitted to the intensive care unit, you may die of bedsores or infections.
One of the objectives of The Dignitas Dolentuim Association is to solve various problems, such as those mentioned above, which ALS patients face in Poland. The Associations wants to help them live and die in dignity.
Our Association was formed by ALS patients and their families, whose common aim is to support those who suffer from ALS and provide assistance to those affected by the disease. We know from our own experience how devastating the disease is, however, we also know what kind of medical care the ALS patient should be provided with.
How can you help us?
Your donations will enable us to provide ALS patients with professional medical care. As there is no known cure for the disease yet, that is all what we can do for them for the time being. By making your donation today, you help those who are really in need of it. Your regular fund transfers to our bank account would enable The Association to operate more effectively.
Our bank account details:
IBAN: PL61124044321111000047210358
SWIFT/BIC: PKOPPLPW
Account Number: 61124044321111000047210358
What does the name of the Association mean?
The words dignitas dolentium come from Latin and signify the dignity of those who suffer.
How does the Dignitas Dolentium Association want to help those who suffer from ALS?
Firstly, the Dignitas Dolentium Association wants to inform people about the disease and raise ALS awareness among doctors and medical staff by organizing specialist conferences. Moreover, it plans to organize various practical training courses for those who tend ALS patients, issue informative leaflets and books, open a helpline and also create internet websites.
ALS patients have a right to die in dignity at home, among their family. Close cooperation with other institutions such as hospices would enable us to assist the families in providing terminal care for the patient. Everyone affected by chronic disease is aware that it entails spending considerable sums of money. Not only does ALS involve suffering, but it is a very expensive suffering. The Dignitas Dolentium Association is going to partly fund physiotherapy, the costs of drugs, medical care etc. Due to the disease, patients and their families may feel rejected and abandoned. The Association intends to provide support not only to the patient but also to those who tend them. Moreover, it intends to organize various meetings, regularly update the website and also find volunteers ready to help. What is more, The Association does its best to help ALS patients get back to work or fulfill themselves in a different way.
What has the Dignitas Dolentium Association achieved so far?
We have created the first Polish informative website devoted to ALS thanks to which patients have access to the latest news on ALS. Users of our forum make friends, exchange valuable information and offer each other support.
The Association has also opened a helpline where our consultants comfort and give hope to those who are in need. We also offer free consultations with our specialized staff like social carers, for instance. Further information on ALS and various assistance for patients and their families can be obtained from the following email address: mnd-sla@wp.pl.
In a few months time, SLA pamphlet covering the most important information about the disease will be issued. It will be available to everyone free of charge.
Translator: Malgorzata Smykiewicz. |