UK

Woman who liveswith rare lymphatic illness reveals it can make her limbs swell to twice their size

A woman who was born with a rare lymphatic condition that means her extremities can swell up with fluid says she suffered in silence for years trying to hide her condition – and has faced humiliating experiences with potential love interests, including a date who put a pillow on her arm to hide it in bed.    

Nicole Faccio, 33, who was born in Puerto Rico, but now lives in Shoreditch, East London, came out of the womb with a swollen left arm, the first sign that she had a rare condition known as lymphedema, an abnormal build-up of lymph fluid, which runs under the tissues of the skin. 

The product manager, who’s shared her story on the Normal Adjustments podcast, says she’s now managing to live a ‘pseudo normal life’ despite needing at least a month off every year to clear a collapsed lung and being affected by swelling in her her left arm, both legs, abdomen and genitals as well as some of her internal organs. 

Most sufferers try to reduce edema – swelling – caused by the degenerative condition using compression garments, and Nicole wears seven pieces a day. 

The condition is largely self-managed and those with it must try and maintain a healthy weight and avoid foods high in salt to control the swelling. 

Nicole Faccio, 33, who was born in Puerto Rico but now lives in London, was born with a swollen left hand, and was diagnosed in childhood with lymphedema, which also affects both of her legs, her abdomen and genitals as well as some of her internal organs

The 33-year-old says while she doesn't want a 'pity party', it's important that she shares how difficult the condition can be to live with, something which she has done on her Normal Adjustments podcast

The 33-year-old says while she doesn’t want a ‘pity party’, it’s important that she shares how difficult the condition can be to live with, something which she has done on her Normal Adjustments podcast

Nicole pictured as a little girl growing up in Puerto Rico, with her 'superhero' parents and her younger brother, Ian, who doesn't have the condition

Nicole pictured as a little girl growing up in Puerto Rico, with her ‘superhero’ parents and her younger brother, Ian, who doesn’t have the condition

She tells FEMAIL she doesn’t want a ‘pity party’ and that it’s taken almost 28 years for her to find a way to live a near normal life – but that she’s suffered ‘humiliations and dark days’ along the way.  

Nicole calls her parents ‘heroic’ in their efforts in finding out what was wrong with their daughter, saying they were fobbed off when she was born about the seriousness of her condition, and were even told her swollen left arm might have been down to the umbilical cord being trapped around it during birth. 

‘They are real heroes. They went looking for second and third opinions, and would look up medical journals in the library to try to find out more about my condition.’ 

After many years, Nicole’s parents discovered that Nicole had Milroy Disease, a genetic disorder that affects the normal function of lymphatic system due to lymphatic malformations. 

She’s since had consultations with doctors in Germany and Austria, who have helped to ease her symptoms and prevent infection, which can be common. 

Fears: The product manager says she still has some anxieties about not being accepted but that social media has generally been a kind environment, as she's found kinship with other people with lymphedema

Fears: The product manager says she still has some anxieties about not being accepted but that social media has generally been a kind environment, as she’s found kinship with other people with lymphedema

Nicole says she hopes sharing her story will help others who haven't been able to get the same information about the condition that she has access it

Friends and family in Puerto Rico gave her a largely normal childhood, she explains

Lucky: Nicole says she hopes sharing her story will help others who haven’t been able to get the same information about the condition that she has access it. Right: Friends and family in Puerto Rico gave her a largely normal childhood, she explains

What is Lymphedema? 

Primary lymphedema is caused by alterations (mutations) in genes responsible for the development of the lymphatic system.

The faulty genes cause the parts of the lymphatic system responsible for draining fluid to not develop properly or not work as they should.

Primary lymphedema often runs in families, although not every child born to someone with the condition will develop it themselves.

Secondary lymphedema develops in people who previously had a normal lymphatic system that then becomes damaged. 

Source: NHS England 

 

While she says her parents did a great job of protecting her when she was younger, she has faced some negativity in adulthood because of a lack of education about her condition. 

Though a confident spokesperson for the lymphedema community, Nicole says she doesn’t always feel like painting a positive picture because life with the condition can feel difficult and degrading, particularly when it comes to being open about her health with potential boyfriends. 

She says: ‘I suffered in silence for many years and do still struggle. I do many times feel self-conscious, I am afraid of dating and not being accepted by others. 

‘I struggled for many years by trying to ‘fit the mould’ but I made a decision to concentrate on the good things I do have, to live based on love rather than fear.

‘I’ve had humiliating situations with dates in which they stare awkwardly at my arm. Or have put a pillow on top of my arm in bed.’ 

She says she’s hoping to shine a spotlight on lymphedema, to help others who suffer with the condition but don’t have access to a maintenance plan for the largely self-managed condition. 

Nicole says: ‘I consider myself lucky because I’ve been able to find help. This is not the case for many others. 

‘Many people misinterpret my positive attitude as “everything is okay”, because for me there is no other option than to appear positive. It’s important that I’m open and honest about my story.

‘I now understand that the bad days will pass and the good days will come, and that’s ever changing because we’re only human.’ 




Source link

Related Articles

Back to top button