Saturday, February 25, 2017

Rare Disease Day February 28th 2017


I feel bad admitting this , but I was not familiar with this at all and today learned about this day. My dear friend Ramona Passed away few years ago with Pulmonary Fibrosis a not so rare disease that is not well known . I have a second cousin Joey who is 14 years old with a VERY rare Lung Cancer and was given a short life expectancy and is still going strong trying to not give up on life. I suffer from MANY ailments but only a few of them I would consider as "RARE" because they are not talked about much and have NO cures! Rheumatoid Arthritis, Fibromyalgia , PCOS, Endometriosis, and I also have multiple Endocrine Disorders along with other crap . My personal story is VERY LONG going back as early as when I was born 6 weeks early under developed and very sick with a 50%/50% chance of living. As a toddler My mom was told I will ALWAYS have medical issues and boy they were not kidding! The joy of being born in the 70's! I have suffered with Chronic Depression my entire life , Intestinal Issues as well as a VERY low Immune System so I would catch everything when I was younger. My Intestines are still a major problem for me and will always be, and I have a vitamin deficiency , always have , and always will but I try to live a normal life ( what I call normal ) .  

My dear friend Mona ( Ramona) she was in her 50's  when she passed away from Pulmonary Fibrosis a Disease they say is due to smoking, but how can one get it if they NEVER smoked!!?? Well after the fact they are believing if you had chronic Bronchitis, pneumonia , anything LUNG related it can cause " scarring" of the lungs and can turn into PF. So on my dear friends dying  wish I went and had a test done because I  had so many episodes of bronchitis and other stuff and my test came back border line Asthma so I will be watching  my lung health a little more . PLEASE friends, acquaintances, family, PLEASE get your routine test done, keep up with YOU, because there are more than 6,500 RARE diseases out there, not including those that are not rare.  God Bless all who have ANY health Issues! 

What is Rare Disease Day?
Launched by EURORDIS and its Council of National Alliances in 2008, Rare Disease Day has and continues to collaborate with organisations globally in order to put on events, create media coverage, and ultimately raise awareness amongst the general public and policy-makers about rare diseases and their impact on patients’ lives.
The strong momentum behind the cause and for the international campaign around Rare Disease Day was started and continues to be led by patients and patient organisations. The primary drivers and beneficiaries of the international campaign are the millions of people around the world living with a rare disease and their families.
Rare Disease Day also serves in helping to generate the political momentum necessary to further advocacy purposes. In the past, Rare Disease Day has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries. The objective is for the last day of February to become officially recognised as Rare Disease Day by the World Health Organisation and to raise increasing awareness for Rare Diseases worldwide.
Rare Diseases International (RDI) continues to be a strong common voice on behalf of all people living with a rare disease around the world. In October 2016, the Rare Diseases Conference in South Africa saw the launch of the African Alliance for Rare Diseases. The conference proved to be very useful in forwarding the rare disease agenda in South Africa and across the African continent and will hopefully be just the start of the rare disease dialogue in Africa.
November 2016 saw the successful inauguration of an NGO Committee for Rare Diseases. The launch event took place at the United Nations Headquarters in New York, where over a hundred rare disease stakeholders joined together to discuss the global state of play for rare diseases. The Committee will aim to ensure that no one person living with a rare disease is left behind and in turn serves to advance efforts to achieve UN’s Sustainable Development Goals (SDGs).
On rarediseaseday.org you can find more information about Rare Disease Day as well as about the thousands of events happening around the world to build awareness for people living with a rare disease, and the support groups around them. If you would like to get involved, register your details on our Post your Event in order to get your event listed.
I am making a PRAYER journal, IF you would like me to add your name and Ailment to it, please COMMENT with your name and Ailment please. 
God Bless!

Vanessa 
P.S.
Wearing BLUE on Tuesday , IF you wear JEANS wear them proud on Tuesday! 

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