Vitiligo

5-Year-Old Diagnosed with Rare Autoimmune Disease to Undergo Bone Marrow Transplant

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Paige Neale is a lively 5-year-old girl living with a rare and debilitating autoimmune disease. Image courtesy of Fox News.

5-year-old Paige Neale of Maryland has an autoimmune disease so rare, scientists believe that there are only 100 people on the planet who have ever had it.

The disease is called lipopolysaccharide-responsive and beige-like anchor protein deficiency, or LRBA deficiency for short. The autoimmune disease causes Paige’s body to attack her joints and internal organs, like her stomach and lungs. Paige was diagnosed with the rare autoimmune disease when her parents noticed that she was getting sick a lot more often than her fellow peers her age, including suffering from swollen joints and various GI issues.

Commenting on his daughter’s diagnosis, Mike Neale said: “It’s such a tough diagnosis because you don’t know what to expect…what laid ahead for her, and what do we do next?”

According to the National Institute of Allergy and Infectious Diseases, the disease is caused by a genetic mutation in the LRBA gene. Patients with the condition are highly susceptible to infections, especially of the upper respiratory tract. LRBA deficiency can also cause various symptoms, including poor blood clotting, anemia, weakness, fatigue, joint pain, stiffness, and eye inflammation (uveitis). It can also make patients more susceptible to developing other autoimmune conditions, such as vitiligo, psoriasis, and type 1 diabetes, which cause additional symptoms as well.

For her part, Paige was also diagnosed with the autoimmune condition juvenile rheumatoid arthritis in addition to LRBA deficiency. To keep her alive, Paige receives bi-weekly shots that cost thousands of dollars, but a new procedure is giving Paige’s family hope for the future. Their little girl is to receive a bone marrow transplant in April from her 3-year-old sister, who happens to be a 100% match.

“Right now you look at her, and she looks like a completely healthy five-year-old girl,” said her father Mike. He continued, “We tend to forget how sick she was leading up to that, so we question ourselves: Should we be putting her through this bone marrow transplant that is going to destroy her immune system and make her really sick?”

If the procedure is successful, however, Paige will no longer need to get bi-weekly injections, and she’ll be able to go on to lead a normal life – an end result that her father says is the ultimate goal. Paige enjoys skiing and horseback riding – activities that have given her and her family a sense of normalcy during the COVID-19 pandemic, and throughout her vigorous treatment regimen.

To follow along with Paige’s heartwarming story, check out the Pray 4 Paige Facebook Group.

Mattel Releases Diverse Barbie Collection, Featuring Dolls with Autoimmune Diseases and Disabilities

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The New Line Features Dolls with Vitiligo, No Hair and Prosthetic Limb

Toymaker Mattel is drawing headlines with its latest Barbie collection, featuring a new line up of dolls with autoimmune diseases and disabilities, as well as a more diverse depiction of beauty.

The lineup includes a doll with vitiligo, an autoimmune condition in which the body attacks and destroys the cells that produce melanin, a pigment that give the skin color. This results in white patches or irregular shapes on the skin that can grow and spread.

Stella Pavlides, President and Chief Executive of the American Vitiligo Research Foundation in Clearwater, Florida, applauds the move by Mattel to showcase dolls with the condition. She says that children living with vitiligo could benefit from a doll that looks like them, especially when it comes to dealing with the social stigma of the disease. Pavlides, who has vitiligo herself, recalls that the social stigma of growing up with the condition was so severe, that store clerks would refuse to take money from her hand.

The lineup of Barbie dolls also features another model with no hair, which could be appealing to young girls who suffer from alopecia, an autoimmune disease in which the body attacks and destroys hair follicles. Conversely, the line also includes a male Ken doll with long, luscious locks, rather than the traditional preppy crew cut.

The South China Morning Post reports that the move by Mattel represents a broader move by society to be more accepting of diverse representations of beauty. For example, Canadian model Winnie Harlow is famous for becoming the first supermodel with vitiligo, and Congresswoman Ayanna Pressley recently revealed her battle with alopecia.

Mattel’s new collection of barbies also includes a doll with a golden prosthetic limb, demonstrating that beauty comes in all forms, and includes those with disabilities, too. In 2019, the company had released a doll in a wheelchair as well.

Mattel reports that over half of their dolls sold by the company came from a diverse set of backgrounds. In fact, a spokesperson for the company stated that their top selling doll was an African-American Barbie with an Afro.

What do you think of Mattel’s move to showcase more diversity in their dolls, particularly those showing chronic illnesses and disabilities? Leave your thoughts in the comments below!

Kim Kardashian West Discusses Painful and Scary Autoimmune Diagnosis; J.K. Rowling Donates Millions to Fund Multiple Sclerosis (MS) Research

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Kim Kardashian West gets an ultrasound of her hand, leading to a ‘painful and scary’ diagnosis.

Kim Kardashian West Discusses ‘Painful and Scary’ Autoimmune Diagnosis

Celebrity and business mogul Kim Kardashian West discussed her recent autoimmune diagnosis on an episode of Keeping Up with the Kardashians. During the episode, Kardashian West visits a doctor with symptoms including pain, swelling and stiffness in her joints. She already has an autoimmune condition called psoriasis that causes red, flaky and scaly patches to appear on her skin, which she had developed at age 25 after catching a cold. Now, at age 38, she was informed that her psoriasis has morphed into psoriatic arthritis.

According to the National Psoriasis Foundation, 125 million people worldwide suffer from psoriasis. Furthermore, it’s estimated that 1 in 5 individuals with psoriasis will develop psoriatic arthritis in their lifetime.

Kardashian West said that her symptoms, including joint pain in her hands, got so bad that she was unable to even pick up a toothbrush. An initial blood test she took came back as positive for lupus and rheumatoid arthritis, but it was later shown to be a false positive after a review of her symptoms and getting an ultrasound of her hands.

Despite the harrowing diagnosis, Kardashian West is maintaining a positive attitude, saying “It’s still painful and scary, but I was happy to have a diagnosis. No matter what autoimmune condition I had, I was going to get through it, and they are all manageable with proper care.”

The star also bonded with fellow beauty mogul and fashion model Winnie Harlow, who has an autoimmune condition called vitiligo. As she revealed during a recent interview with Jimmy Fallon, Kardashian West spoke to Harlow for over an hour to get her ‘opinion and advice’ on her autoimmune diagnosis.

To learn more about psoriasis and psoriatic arthritis, visit the National Psoriasis Foundation website.

J.K. Rowling has made a multi-million dollar donation to fund MS research, at a clinic named after her late mother

J.K. Rowling Donates Millions to Fund Multiple Sclerosis (MS) Research

J.K. Rowling, renowned author of the Harry Potter book series, has made a generous donation to fund Multiple Sclerosis (MS) research in the U.K.

Her donation, in the amount of 15.3 Million British Pounds (equivalent to $18.8 Million USD), will be used to construct a new facility for the Anne Rowling Clinic at the University of Edinburgh, which is dedicated to MS research.

The Anne Rowling Clinic was established at the Scotland-based university in 2010, when J.K. Rowling had made another generous donation to fund MS research. The clinic was named after her mother, who suffered from MS and passed away due to complications from the disease at the young age of 45.

Rowling has said that she is immensely proud of the work that the clinic has accomplished, and that they are providing “practical, on the ground support and care for people with MS.” The University’s Vice Chancellor, Professor Peter Mathieson, also commented, “We are immensely honored that J. K. Rowling has chosen to continue her support for the Anne Rowling Regenerative Neurology Clinic. This inspiring donation will fund a whole new generation of researchers who are focused on discovering and delivering better treatments and therapies for patients.”

To learn more about the Anne Rowling Clinic and to view a video of their important work, click here.

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