A quick search on the internet reveals countless diseases that affect women in many different ways but most women do not know the first things about these diseases and how to guard against them. In this week’s article, we will be presenting the touching story of a young lady who was diagnosed with Systemic Scleroderma just after her honeymoon. Living with this disease has been without doubt the most challenging time in her life even as her body has begun to take other forms.
This brings to reality the pains attached with managing terminal illnesses but it also brings a ray of hope to many women living with these diseases across regions because despite her difficulties, Chanel White stays happy as she smiles for her daily selfies to get her mind off the pains. Here is her story:
She suffers from a rare autoimmune disease that is turning her body into stone as she live with a chronic illness for which there is no cure.
Chanel White was a 20-years-old newlywed just off her honeymoon when she was diagnosed with systemic scleroderma, a disease characterized by the hardening of the skin and connective tissues. The former Montessori school teacher was given 10 years to live in 2011, and while she can no longer work, eat or do many of the things she used to love, she is sharing her experience with others on her blog The Tube Fed Wife.
‘In the media, you see stories of people who are doing all of these amazing things when they are sick, and honestly for me and many others it’s not that way,’ she told Yahoo Health. ‘I think people aren’t as interested in that; it’s boring, but it’s the reality.’
‘Illness is not a glamorous existence, and it’s important for people to know that,’ she added.
Chanel explained her day-to-day life includes a lot of naps, doctor’s appointments and medication, noting that she is often ‘too sick to do anything’.
In order to combat her body’s overproduction of collagen, Chanel takes 28 different medications daily – all of which have to be taken multiple times a day. The disease, which is also hardening her esophagus, stomach and bowels, has taken away her ability to eat.
To ensure that Chanel will not starve to death, she has to be hooked up to a feeding tube for 14 to 15 hours a day – receiving two ounces of nutrition every hour so her stomach doesn’t get overwhelmed.
Chanel says she spends most of her day-to-day life taking medications and feeling awful, but she takes smiling selfies of herself so she cans show others that she still manages to enjoy life. And Chanel, who also has regular chemotherapy treatments, typically has one to three doctors’ appointments a day.
‘I live in pajamas,’ she noted. ‘I probably own more pajamas than I do clothes.’
While Chanel said she does not want people to ‘misinterpret the illness’, she does post pictures of herself wearing make-up and smiling to her social media accounts.
Scleroderma, or systemic sclerosis, is a chronic autoimmune disease characterized by the hardening of the skin and connective tissues.
People with scleroderma have higher amounts of collagen deposits in their body than those who are healthy.
Symptoms of scleroderma vary for each person, and the effects of the disease can range from very mild to life-threatening depending on which parts of the body are affected.
While localized scleroderma, the more common form of the disease only affects the skin, systemic scleroderma is very rare and includes hardening of the skin, as well as one or more internal organs.
Mild scleroderma can become more serious if left untreated however, diagnosis is difficult as the symptoms of scleroderma are similar to those of other autoimmune diseases.
An estimated 300,000 Americans have scleroderma and approximately one third of those people have the systemic form of the disease.
While scleroderma is not thought to be directly inherited, it has been observed that some people have a slight predisposition for the disease as the result of a family history of rheumatic conditions.
Development of scleroderma can occur at any age, and women are four to nine times more likely to develop scleroderma than men.
‘I think it’s important to show that you can still enjoy life in a broken body, but it’s also important to have people understand that this one picture of me smiling is not me, it’s the face that I put on,’ she said. ‘Those are the rare occasions that I try to enjoy when I get them.’
Chanel started noticing symptoms of her disease when she was 19-years-old, but the bride-to-be was distracted by work and planning to wed her high school sweetheart.
‘We were both overcome with excitement and joy for our special day so when I started noticing odd pains in my body I ignored them, shrugging it off as wedding stress,’ she wrote on her blog. ‘As our beautiful wedding day came and went I noticed my symptoms didn’t fade as I had hoped but worsened.’
Chanel’s hands would turn purple, even in warm weather; she was tired all of the time and starting to lose her hair. She finally went to a doctor after her fingertip turned ‘black and scabby’ as if she has burned it cooking.
‘He took one look at me and told me: “You have scleroderma,” she told Yahoo of her immediate diagnosis.
Chanel explained that it takes most people years to be properly diagnosed because their illness is often confused for other autoimmune diseases such as lupus. In one life-changing afternoon, she was given pamphlets and started chemotherapy pills and immune suppressants that day.
‘Immediately after that appointment, it was a drastic life change,’ she said.
Because her fingers are tight and swollen, people often mistake her disease for something that only affects her hands.
‘I kept trying to explain to them: “Yes, you can see that my hands are purple, you can see they have sores on them, but that’s also happening to my organs”, she said.
Fewer than 100,000 American have the systemic form of scleroderma and life expectancy can be anywhere from five months to 20 years depending on the onset of symptoms.
Chanel was told she would be ‘fortunate’ to live another decade, and she has had to fight for her life more than once since her diagnosis.
In 2014, she was rushed to the emergency room after she collapsed while walking up stairs at the mall. She has battled meningitis and the bacterial infection Clostridium difficile, as well as spinal fluid in her brain.
‘It was to the point where they basically told my family: “Say your goodbyes,”‘ she recalled.
Chanel miraculously recovered and went to rehabilitation to learn how to walk again, but her disease is now attacking her respiratory muscles, making breathing difficult and requiring her to carry around oxygen.
‘This disease truly damages every inch of you,’ she said.
Chanel said her husband Noel is her ‘number one supporter’. Even though their lives have changed drastically since her diagnosis, he has adapted, spending countless nights sleeping in an ‘uncomfortable chair’ during her many hospital stays, some of which have lasted 30 days.
‘I absolutely would not be able to face this battle without him,’ she noted. I’m not going to lie and say I don’t have breakdowns and I don’t get upset that I’m dying at the age of 23. There are times when I can’t be strong’
Chanel said in that moment it is her husband who tells her that they are going to be okay, explaining: ‘Not that it’s going to be okay because we both know that it’s not going to be okay. But it is okay where we are at. We are together and he’s going to be there.’
And despite all the suffering she faces on a daily basis, Chanel said that her disease has opened her ‘eyes to the world’ because before her diagnosis she never thought about how ‘life can be over in an instant’.
‘I feel that I am a completely different individual since I became sick, like it opened this part of me that I just didn’t know really existed,’ she said. ‘I’m stronger and more resilient. I understand that I need to stop and take time to do the clichés, like smell the flowers, take the longer journey, and just enjoy the little things.’