160 MYASTHENIA GRAVIS IN CYPRUS

ROUGHLY 160 Cypriots are estimated to suffer from myasthenia gravis, a disease that presents with various kinetic problems that often lead to disability, according to Health Minister Petros Petrides.
“It is an extremely rare disease, afflicting 20 in 100,000 people, which means that 160 Cypriot citizens suffer from it,” he said speaking at an event heralding the Annual European Myasthenia Gravis week – February 24 to March 2.
Petrides said “the disease can be met in any race, gender and age group, and is not contagious or hereditary, though it may develop in more than one member within a family.”
The introduction of a National Committee for rare conditions, he said, marks the first attempt at a holistic and coordinated effort against these diseases.
According to the minister, “the strategy will focus on four areas: prevention, treatment, supportive care and research”, as well as “the introduction of consistent record-keeping of incidents of rare conditions in order to best organise services offering care to those in need.”
The health ministry offers all related services for free, including specialised neurological exams, up-to-date pharmacotherapy, treatment interventions, as well as supportive treatments like physiotherapy and ergotherapy.
“We aim to continually improve our services, and hope that implementation of our new strategic plan on rare conditions will see patients enjoying significantly more advantages than they currently do,” the minister concluded.

WANTED AN ASSISTANT TO HELP WITH HEALTHCARE

I was not quit aware of have it was to have an illness. I not talking about just the symptoms and the medications. I am speaking about keeping up with the appointments. To truly be a full time patient takes work. First you are of course monitoring your self. Making sure you are eating the correct foods. As much as I would love to eating whole cakes and gallons of ice cream is not a good look. especially when you may already have deficiencies. So eating healthy would be the most logical thing to do. Then there is the medications.You must make sure you are update with refills.Get them rewritten at time of Doctor visit. If you are using mail order services. No how long they take to process orders and if you need a hard copy script versus e-script. Because without  all his knowledge it can leave you with no medication. I have experienced this first hand.If you have a pharmacy plan no your co-pay. (For the sake of sanity I will not go into Medicare programs.)So while monitoring what yo put into your mouth. You must also monitoring how it effects your body. Side effects and the symptoms or action of drug. So yo must research. Research what side effects are for a particular drug. An report if you are experiencing any of the side effects. Are you experiencing some type of symptom. If so what is it? Is it apart of your illness? Or a result of a side effect?

HEALTHCARE WORKER UNHARDEN THY HEART.

Not until my current situation had I noticed how insensitive health care workers can become. Since diagnosed with Myasthenia Gravis,over 3 years ago I have been traumatized. You see I am a former healthcare worker. And I have been on the other side as well. So I empathize with a lot of the woes that can effect the profession. The work conditions,long hours,difficult patients and unyielding family members,rules and regulations.Oh I no I can go on and on. But I always performed my job the same whether watched or not watched. I feared not doing the correct thing could bring harm upon my patient. Or talking rudely or disrespectfully was not warranted.I respected the fact I was the Healthy one.  But it comes to my attention as a patient myself how condescending and rude healthcare workers can be. I am sure it happens over a period of time thru many cases of abuse. Abuse by the system,patients,colleagues and others. I have had a technician speak harshly to me because of my disability benefits. She all but said her friend was much more deserving of the benefits and was unable to obtain . Or a Nurse who was so condescending that she questioned my symptoms I experienced. As if the information received in a textbook could stand up against a real live patient. Mentally writing me off as not knowing what I felt or able to interpret the feelings. As well as a Practitioner who refused to believe the pain she was inflicting upon me was not an acceptable part of a treatment. And I should swallow the pain with out complaining.And this is just to name a few. I practiced Nursing for 0ver 22 years. S o to say I don't understand would be wrong. I do understand the plight of the Hospital Nurse,Nursing Home Nurse, Home Health Nurse, Managerial Nurse,Private duty Nurse and a host of scenarios attached. Because I lived them. Some where along the way some of us experience an hardening of the heart. And a smug exterior supported by medical knowledge. Which is a plus and a minus. Because I know the difference between "Good Care" and "Minimal Care". And it makes me ever so much more anxious when it comes to Doctor visits. Not knowing if I am safe to be a patient benefiting from the expertise of the Medical Professional. Or the Healthcare worker/Patient that has to identify my self to guarantee some respect for my reporting of problem.Which only places the worker on their guard. It often worries me to think of the patients without the small amount of Medical knowledge I have. To not have the chance to correct the errors that I have experienced all because they didn't know. Or the healthcare workers that perform at minimal capacity because they feel they are safe in their ignorance. As a closing note. I did not choose my current condition. Nor did I have an idea I would have to end my Nursing career because of illness. So with that said,remember  Healthcare Worker that patient you gave poor service to could one day be you!