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NI woman raising awareness of the rare blood dyscrasia that killed her father and brother

A woman in County Antrim, along with her dog Pixie, is leaving to raise awareness throughout Northern Ireland about the rare blood disorder that killed her father and brother.

From Shalong Leg Greenis Land She suffers from hereditary hemorrhagic capillary dilatation (HHT) and hopes to be able to educate more people who may not have been diagnosed with her fundraising activities.

HHT is a rare hereditary blood disorder that affects blood vessels, and parents with HHT have a 50% chance of infecting their children.

Sharon told Belfast Live about the disease: “People with HHT have poorly formed blood vessels, causing spontaneous and bleeding both inside and outside.

“Frequent blood loss can lead to iron deficiency, anemia, and even more serious conditions. bleeding You can lose your life. ”

Pixie accompanies Sharon on her sponsored walk

She explained that it can be as simple as forward bending and changes in temperature and stress that can cause bleeding.

“It progresses without treatment and only blood transfusions and iron blood can stabilize us.

“I have severe nosebleeds, mouth bleeding, stomach and intestinal bleeding, eye bleeding and arterial bleeding from my fingers.”

Sharon was diagnosed in 2014 after falling with a deadly blood clot in her lungs and legs.

She continued. “My grandfather had this illness. He died in 1964 at the age of 52 and had all the symptoms. My father and his brother took it, my brother and I took it. Taken-There is little awareness of HHT as it has been 50 years since my grandfather died before I was diagnosed.

“My dad wasn’t diagnosed, my brother wasn’t diagnosed, my grandfather wasn’t diagnosed. I was only diagnosed in 2014 and I knew what this was. started.”

The symptoms of HHT are:

  • Frequent nosebleeds of unknown cause
  • Red spots on the skin / phalanges
  • Arteriovenous malformation (AVM)
  • Family history of similar symptoms

Sharon and Pixie hope their efforts will lead to more support for those suffering throughout Northern Ireland.

On Saturday, June 12, Sharon is about to walk 10km to raise a coveted perception of Northern Ireland’s illness and significant funding for those suffering, despite the difficulties of HHT.

“I’m working with HHT Ireland. This is the only form of support as there is little support here. We don’t have our own support group. We want to raise awareness of the disease,” Sharon said. Mr. says.

“Some people may be trapped in surgery by a doctor who thinks they have only nosebleeds, but since they don’t know anything under their body, I would like to know their symptoms and refer them to a hematologist.”

If you would like to donate to Sharon’s fundraising activities in HHT Ireland, Here..

NI woman raising awareness of the rare blood dyscrasia that killed her father and brother

Source link NI woman raising awareness of the rare blood dyscrasia that killed her father and brother

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