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D'Arcie Hall in the news: Hopes to travel and meet members of Alopecia World
D'Arcie lost all her long brown locks but she goes out everyday with a smile on her face
Posted by Evening Gazette on September 26, 2008 12:08 PM
D'ARCIE Hall was only 11 when she started to lose her hair.
Her world fell apart when doctors told her she had alopecia and there was nothing they could do to make it grow back.
The youngster was devastated but put on a brave face as she pulled clumps of her long brown locks out in the shower.
Her mum Amanda watched helplessly as the condition cruelly stripped her daughter of every hair on her body including her eyelashes and eyebrows.
Today she is urging other parents not to be fobbed off and to seek out the support that is available to them.
"Alopecia is often shoved under the carpet because it's not life threatening but it has a big impact on your life," said Amanda.
"I'm not after a miracle cure, but I do think people should try and address the problem more than they do.
"It's psychological. D'Arcie copes with it really well but we have met people that won't take their wigs off in front of their own family."
She said they were not even given details of support groups when D'Arcie was diagnosed.
"As soon as somebody is diagnosed they should see a counsellor.
"And there should be more help from doctors on where to turn. It was almost a year before we met anybody else with the condition."
At the time D'Arcie's family was living in the Midlands but a year ago they moved to Saltburn to make a fresh start.
D'Arcie, 13, now attends Huntcliff School and loves to spend her free time riding horses on the beach.
"She has never ever been bullied," said Amanda, 44, who is a full-time carer for husband Kevin, 45.
"When her hair fell out I went to the headmaster and asked if they could do an assembly to explain what it is."
While her schools have been very supportive, the teenager still has to cope with people staring at her in the street or wrongly assuming she has cancer.
"She won't wear a wig, she just wears a head band," said Amanda.
"She's a very bright and pretty girl.
"We allowed her to put make up on earlier than she would have done previously.
"I'm very proud of her - she goes out every morning with a smile on her face.
"She has only cried once when she went in the shower and her hair came out in handfuls."
D'Arcie, who has two older brothers and two older twin sisters, has been told she is basically allergic to her own hair.
The youngster has also been diagnosed with a thyroid problem but this would not have been discovered if her mum had not pushed doctors to give her a blood test after researching her condition on the internet.
"I think they should automatically be given blood tests when they are diagnosed," said Amanda. "It's also a shame people cannot get real hair wigs on the NHS."
Internet research also led to D'Arcie meeting other girls with the condition through Alopecia UK which organises an annual trip for them to Alton Towers.
She then discovered the charity had a support group based in Hartlepool and has never missed a meeting since.
"It's just nice to know how they feel as well," said D'Arcie, who is hoping to travel to the US in June to meet members of Alopecia World.
The Hartlepool Support Group meets on the last Thursday of the month at Hartlepool Central Library. For more information email nina.welsh@alopeciaonline.org.uk, visit www.alopeciaonline.org.uk/groups/Hartlepool/ or call Amanda on 01287 622822.
Posted by Evening Gazette on September 26, 2008 12:08 PM
D'ARCIE Hall was only 11 when she started to lose her hair.
Her world fell apart when doctors told her she had alopecia and there was nothing they could do to make it grow back.
The youngster was devastated but put on a brave face as she pulled clumps of her long brown locks out in the shower.
Her mum Amanda watched helplessly as the condition cruelly stripped her daughter of every hair on her body including her eyelashes and eyebrows.
Today she is urging other parents not to be fobbed off and to seek out the support that is available to them.
"Alopecia is often shoved under the carpet because it's not life threatening but it has a big impact on your life," said Amanda.
"I'm not after a miracle cure, but I do think people should try and address the problem more than they do.
"It's psychological. D'Arcie copes with it really well but we have met people that won't take their wigs off in front of their own family."
She said they were not even given details of support groups when D'Arcie was diagnosed.
"As soon as somebody is diagnosed they should see a counsellor.
"And there should be more help from doctors on where to turn. It was almost a year before we met anybody else with the condition."
At the time D'Arcie's family was living in the Midlands but a year ago they moved to Saltburn to make a fresh start.
D'Arcie, 13, now attends Huntcliff School and loves to spend her free time riding horses on the beach.
"She has never ever been bullied," said Amanda, 44, who is a full-time carer for husband Kevin, 45.
"When her hair fell out I went to the headmaster and asked if they could do an assembly to explain what it is."
While her schools have been very supportive, the teenager still has to cope with people staring at her in the street or wrongly assuming she has cancer.
"She won't wear a wig, she just wears a head band," said Amanda.
"She's a very bright and pretty girl.
"We allowed her to put make up on earlier than she would have done previously.
"I'm very proud of her - she goes out every morning with a smile on her face.
"She has only cried once when she went in the shower and her hair came out in handfuls."
D'Arcie, who has two older brothers and two older twin sisters, has been told she is basically allergic to her own hair.
The youngster has also been diagnosed with a thyroid problem but this would not have been discovered if her mum had not pushed doctors to give her a blood test after researching her condition on the internet.
"I think they should automatically be given blood tests when they are diagnosed," said Amanda. "It's also a shame people cannot get real hair wigs on the NHS."
Internet research also led to D'Arcie meeting other girls with the condition through Alopecia UK which organises an annual trip for them to Alton Towers.
She then discovered the charity had a support group based in Hartlepool and has never missed a meeting since.
"It's just nice to know how they feel as well," said D'Arcie, who is hoping to travel to the US in June to meet members of Alopecia World.
The Hartlepool Support Group meets on the last Thursday of the month at Hartlepool Central Library. For more information email nina.welsh@alopeciaonline.org.uk, visit www.alopeciaonline.org.uk/groups/Hartlepool/ or call Amanda on 01287 622822.
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