Niagara Falls Lights for HHT Awareness

On Saturday, June 30th Niagara Falls will be illuminated with Red and Blue lights to celebrate HHT Awareness Month! You can WATCH THE COLORS LIVE from 9:30-9:45pm and 10:30-10:45pm. This website, https://sites.google.com/site/niagarafalls4hhtawareness/, has lots of HHT resources.

Keith Scouten of Niagara Falls, NY organized this activity to raise awareness about HHT in his community. He has received media support with a printed news article in his local paper. In addition, Keith will be at the Niagara Falls on June 30th, along with the Mayor and many supporters, to provide literature to all who pass by.

Keith has suffered from HHT all of his life but only recently has he found knowledgeable physicians and a strong support base through the HHT Foundation Facebook group. Keith shared his story in the most recent Direct Connection newsletter. An excerpt from his story gives you a glimpse into why Keith has organized this HHT Awareness Event.

"It was around this time that my sister told me there were Facebook groups for people with HHT; it was then that the feeling of isolation of having a genetic disorder that the world seems to want to ignore began to dissolve.  In these groups, we step beyond the world that is uneducated and unaware of this severe yet treatable disease.  I realize now that there are over 2,000 members on the combined groups that are all saying to each other “we understand and we’re here for each other and we will get through this”.  Each one of us knows the frustration of looking to care for ourselves and our families only to get shrugs and blank looks.  These groups have brought us together as one, with the same mind, to talk to each other, to support each other, to be there for each other, working together for awareness and understanding.  It has been said that there is strength in numbers and the HHT Facebook Group members are that strength that sufferers and families of sufferers need.  It is a blessing from God that He brought me to these HHT pages and if you spend some time and read the posts you will see there are many members of these groups who feel the same way.

As I was driving home from my visit at an HHT Center of Excellence, I was thinking about how wonderful everyone was at the HHT Center.   After years of frustration dealing with medical facilities that simply don’t have any knowledge of HHT, and some even with the attitude that your making something up, it was such a relief and a blessing to deal with a medical facility that knew what I had, knew how it affects me, and knew the special treatments that coincide with this disease.

As I heal up and become stronger, while I still have the free time from work, I started thinking of ways I can help increase HHT awareness in my area.  Suddenly the dream came alive in my mind.  I could use Facebook to encourage others to take the information that the HHT Foundation has provided and share it with their doctors.  I realized that if all 730 members of this Facebook group could drop off information to 5 local hospitals or medical facilities, 3,650 local hospitals and medical facilities would now be aware of HHT.  Could you just imagine if the next time you take your child into a medical facility with nosebleeds you hear “we know what this is and we can take care of it?”  The people of the HHT Foundation have shown us that we can make a difference so I am going to make one!"

Support Keith and the HHT Foundation. 

Get your family and friends to WATCH THE COLORS LIVE

from 9:30-9:45pm and 10:30-10:45pm.