Mother, 30, demands change with petition after suffering with common genetic disorder all her life
A 30-year-old mother is demanding change through a petition after suffering with one of the most common genetic disorders all her life.
Portia Wharton has lived with Sickle Cell Disease for the past three decades and hopes to make a difference to the health inequalities she has faced during that time.
The 30-year-old has a passion to improve the healthcare system and bring awareness to the disease across her hometown of Northampton and on a national scale.
The aim of the petition is to mandate routine full body scans every five years for Sickle Cell patients, and to see them receive free medication.
“Living with Sickle Cell is a journey of unrelenting unpredictability and hardship,” said Portia. “This is a personal plea, coming from a life deeply touched and affected by this genetic disorder – one of the most common across the globe.
“The health scares are constant – from a recent aneurysm diagnosis to ongoing investigations surrounding potential stable angina. It's a battle just to hold on.
“Beyond the uncertainty, the burden of costly medication adds insult to injury. These medications are not just pills, they are an elixir and the difference between life and death for Sickle Cell patients.
“It is strenuous and unjust to require patients to shoulder this financial burden on top of the physical and emotional toll the disorder itself takes.”
The hope for this petition is to improve the quality of life for those impacted by Sickle Cell, as well as ensuring early detection and prevention of complications.
Portia continued: “This is a small step in the right direction for hundreds of thousands of people fighting this debilitating disease each day. It's a gesture of support, empathy, and humanity.”
Portia explained Sickle Cell Disease as a blood disorder that impacts the shape of red blood cells and how well they carry blood through the body.
When red blood cells become distorted, rigid and sticky in Sickle Cell patients, it causes blockages and significant pain – which is different in each person. Portia experiences discomfort in her back, arms, legs and most recently her chest.
“I have a 10-month-old baby and when you become a mother, your perspective changes,” said Portia.
Following her pregnancy, medical professionals recently discovered an aneurysm in her brain – which Portia described as a “shock” and has found it difficult to navigate this news alongside motherhood.
“I could have had this my whole life or it could have been an impact of Sickle Cell Disease,” she said.
“I was in hospital a couple of weeks ago with another crisis, they may have found a stable angina and blockage in the heart. This could have been caused by Sickle Cell and may have been detected sooner through the routine checks I want to see introduced.”
Though Portia’s son does not have Sickle Cell Disease, he carries the trait and may pass it down to his future children. Not only is Portia worried about one day having to tell him, but the fact he will have to watch her deal with the disease.
“I’m an advocate and I want to get this into Parliament,” Portia concluded. “I’m on a mission to make things better for those with the disease, and those yet to be born with it in the future.”