So, Can you imagine a day, or even a moment of being completely incapable of whisking a fly or mosquito sat on your forehead and/or even being incapable of asking someone to help you?
Dear gracious readers,
Have you ever heard of ALS?
ALS (Amyotrophic lateral sclerosis ) is a cureless and ultimately fatal disease, which attacks nervous system and by progressively spreading out to entire body it paralyses the patient's entire body and eventually and very soon will lead to death. In Physiologic term ALS is a neurodegenerative disease caused by the degeneration of motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement and gradually in a typical period of 2~3 years it affects four very important part of patient's lively activities : motion, respiration, digestion, and speech; and all these happen while patient is completely conscious and aware of what is happening to him/her, which literally means being a prisoner of one's body.
So, Can you imagine a day, or even a moment of being completely incapable of whisking a fly or mosquito sat on your forehead and/or even being incapable of asking someone to help you? Same goes for every, otherwise ordinary, daily activities such as using toilet, taking shower, eating and drinking, wearing clothes, etc. which for ALS patients becomes a major challenge and virtually impossible without sophisticated and often expensive equipments, and/or a dozen of helping hands.
On the emotional side of this sad story, can you imagine a moment when your child right in front of your eyes has fallen on the ground and crying for your help and support and not only can't you reach him/her but also you fall short of being able to hug him/her and giving your support or even use your voice.
And on the personal level, Can you imagine how hard can it be to even imagine not being able to breathe as if you are held under water and only a narrow and yet closing gap is all what is left for you to breathe through? Or can you consider how much you can miss something as simple as eating bread and cheese knowing that due to the lost ability of chewing and swallowing, you can't eat or you can't afford the risk of suffocation due to mal-functioning muscles. Indeed it is hard to imagine ALS patients are witnessing their gradual and painful demise as they feel the illness spreading out in their body.
Yet for the patient's company and related persons the psychological impact of seeing a loved one gradually dying in front of their eyes is not less bothering either, especially knowing that there is not much you can do about it and knowing that either there is no crucial helping tools and equipment or you can't afford it. The situation gets even worse for those patients (living in countries with poor, or no social security) whom were working and the family economy was dependent on their income.
Fortunately there with the advancement of new technologies and development of special aiding tools and equipments, it is possible to relief the patients and their related ones at least partially from the major physical burdens that ALS imposes on them, as It is evidently seen that ALS not only paralyses the patients, but their related family members as well. Unfortunately even in well developed countries ALS is not as much known as similar disease such as MS (Multiple sclerosis). It goes without saying that the situation in the developing countries is even more disappointing.
For instance the average survival of ALS patients is developed nations (typically western Europe) is somewhere between 3~5 years whereas in
it is between 6 months and one year. Many of the households with ALS patients who mostly reside further away from the capital don't have any idea about the disease and its escalating symptoms and would soon find themselves struggling with its effects. Especially it is worth considering that ALS even in the developed countries is known as an expensive case considering the cost of equipments that should be covered by health insurances. Iran
We ourselves witnessed the disastrous consequences of having a loved one affected by ALS and Given the described context, instead of collapsing under the overwhelming load of this calamity, we decided to stand up against it and turn this seemingly sad and bitter fate for a loved one into a positive and humane opportunity of helping our fellow country-men and women. We could see how the equipments (which are available for free here in the
) have helped patients to being able to mentally and even physically resist the symptoms of the ailment and partially resume to their daily activities and as a result, decrease the dependency on family members. Therefore, SAIN has been established in the Netherlands as a charity organization for supporting ALS patients In Iran. Netherlands
This website was our first step taken (not long ago) to reach out to peoples affected or willing to help those affected, and despite being new and not so well-known the welcoming support received by those affected increased our morale and made us resilient to continue our way.
Our next step was consulting with some of our physician friends and acquaintances especially in UMC St Radboud, medical center in Nijmegen, the
Netherlands which lead to our decision to establish a branch of this charity in . Some of the consulted physicians even become willing to cooperate further and as much as travelling to Iran . Iran
We vowed not to let ALS patients in
and their families left alone and unsupported and help as far and as much as we can. We know this is not an easy matter as much as we know how crucial and needed this service is. But we also know that we cannot advance in this path without your help. Iran
ALS patients need your help! This help could be fulfilled in as many ways as:
· Helping in shipment of the equipments and tools to
· Introducing or offering the means by which medications and equipments could be obtained free of charge here in
· Financial aids
· Administrative help in various stages
· Discovering or introducing ALS patients in
. in this category we need the help of physicians and specialists in medical centers inside Iran Iran which can be very effective in materializing our help to patients in . Iran
· Emotional and sympathetic support (could be carried out in a regular weekly basis) to patients and their family. For instance for mothers with ALS taking care of their children and arranging picking up the patients for appointments with physicians could be very helpful.
· Cooperation with this website in terms of providing with useful articles and translating the documents, etc.
This is a call for everybody who could join us in realization of a humane and well-praised idea. An idea that can make a great difference in the quality of many other's life.
Contact Info with SAIN org.:
Fax: + 31 (0) 84 836 70 83
Mob.: + 31 (0) 627 53 51 72
you can send your financial aids to this bank account:
Stichting ALS Iran-Nederland (SAIN)
For foreign transfers:
IBAN/SEPA NR.: NL27RABO0157054985
BIC NR.: RABONL2U