Monday, 29 February 2016

Raise your voice for Rare Disease Day

Feb 29th, the world recognizes Rare Disease Day. I am afflicted by a rare disease , ironically it is not so rare.

The Malignant sarcoma I had was even rarer and a complication of Neurofibromatosis NF.

Children's Tumour Foundation Australia is dedicated to providing support to individuals and families affected by neurofibromatosis (NF).

I borrowed a few words from John Huynh President NF Ontario ...

Neurofibromatosis feels like a dichotomy. It is considered a rare disease, yet it is the most common genetic disorder caused by a single gene. It affects 1 in 3,000 , yet is relatively unknown to the majority of people. Some individuals with NF may have serious complications, yet others with NF will live their lives without any complications at all.
Like a snowflake, each and every individual with NF is unique. Unique in how we look, unique in how we are affected by NF, unique in how we manage it. The unpredictability of NF and the wide spectrum of how it affects a person can sometimes create an atmosphere where NF is not talked about. Out of sight, out of mind is one way people deal with NF. While it is a coping mechanism for some, silence will also keep NF in the shadows.
At times the NF community may feel fragmented, but must remember that we all share something in common that is ingrained into our DNA, into our genes. It knows no borders; ethnicity, gender, or economic status. The commonality is Neurofibromatosis. Let’s continue to talk about NF and not be ashamed of it. Talking will help generate awareness and understanding of NF amongst ourselves and the public. As more people are aware, a greater push can be made for research so that one day a cure for Neurofibromatosis can be found.
Awareness starts with each and every one of us. Together we can all do our part.
Are you ready to join the conversation?
John Huynh
NF Ontario
I'm still grappling with how NF affects me and have my whole life - I haven't let it stopped me yet , even though I've had many ups & downs, and health challenges.

Break the isolation of millions of patients and families around the world living with a rare disease.
I don't understand why it's so hard to raise our voices.
Stop the stigma of being different.
Step up to make a difference.

Don't wait for adventure to find you - make your own adventures !

PS : I am running in City to Surf in August to raise funds for research and support programs, provide information to families and friends, educators and health professionals, and assist those impacted to find help and friendship within the NF community.

I Must Confess