Day highlights rare diseases
Mothers of children with rare medical syndromes are calling for a national day of recognition to highlight the unusual challenges they face.
Today, February 28, is marked around the world as International Rare Disease Day.
Tanya Dyer and Sarah Robinson believe that, if Bermuda was to take part in such an event, it would help create a local support network for families of sick children.
Ms Dyer, whose son, Tyrece, has a connective tissue disorder called arterial tortuosity syndrome, told The Royal Gazette: “I have been wanting to do this for a couple of years; to celebrate and mark the day with a proclamation.
“For parents and children who go through this, it would be a day for people to understand that ‘living rare’ is hard when you are on your own, but when you are all together, you are stronger.
“I didn’t have anyone until I met a group at a conference in Little Rock, Arkansas. Since then we have travelled to Belgium to the Ghent University Hospital where they are studying my son’s condition.
“The slogan we use is: alone we are rare, together we are strong.”
Tyrece, 19, suffers from the gastro strain of ATS and has tortuous arteries in his head and neck, which could develop into an aneurysm at any time.
He suffers acid reflux, bladder and stomach pain and joint issues, while three of his vertebrae are so close to his spinal cord that even a small impact could kill him.
Ms Robinson’s son, Kaliq James, 13, has Ehlers-Danlos syndrome, a rare genetic disorder caused by faulty collagen that makes a person’s ligaments and joints overly flexible.
She said: “It is important to have a supportive network because it is a lonely place to be when you are dealing with something so rare and on an island where resources are limited.
“Just having people to be able to reach out to who have something in common and fight the same battles that you do on a day-to-day basis helps.”
Ms Robinson said she had no idea that she had the disorder until she gave birth to Kaliq.
She said: “When I start dialogue with others about it they are really surprised at what it took to get a diagnosis. When I tell them the symptoms I had, it gets them thinking about their own family members. Awareness is so important. It is important to be aware of the red flags that you wouldn’t necessarily think of.
“It is getting into the mindset that the problem isn’t always what you think it is — it could be something else.”
Ms Dyer invited people to get in touch to support her efforts to set up a national day of recognition next year.
She said: “I know a lot of people with rare diseases in Bermuda. Marking International Rare Disease Day can bring about awareness, people can have more empathy for children and for families that are going through this, and we can empower each other when we know we are not going through it alone.”
To get involved, contact Ms Dyer on firstname.lastname@example.org
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