When Skyelah was born her mother Angela immediately noticed something was different. She had three other children who had all cooed and smiled as infants. Skyelah rarely did, in fact, it seemed like she was in pain.
A red dot soon appeared on Skyelah’s skin. Every time she checked again, there was a new one, in another location. When Angela brought up her concerns to the pediatrician they were dismissed. She was told it was most likely just infant acne. With her experiences with her three other children being different, she wasn’t reassured. Weeks later, Skyelah’s skin was covered with red, hive-like marks. Her doctor suspected allergies and even took skin biopsies to no avail.
It wasn’t until she reached out to the NOMID alliance, which in turn, helped to arrange an appointment with the National Institute of Health, that an entire panel of tests were run.
It was then that Skyelah finally received a diagnosis.
It was determined that Skyelah had Muckle-Wells Syndrome.
MWS Is a condition that falls under CAPS (Cryopyrin- Associated Periodic Syndromes); its symptoms typically involve rashes, joint and eye inflammation and fatigue.
Once Skyelah was diagnosed they began to make trips to NIH annually, and began injections of anakinra – also known as Kineret. Still, the family’s struggle with Muckle-Wells was not over. The daily injections, according to Skyelah, felt “like lightening going in” and it often took several family members to keep her still. Her pediatric rheumatologist suggested trying a different drug that only had to be administered every eight weeks.
After starting that, however, Skyelah seemed to get sick all the time. She often had upper respiratory infections that would take her two weeks to get over with the help of antibiotics or steroids. Then her hair stopped growing, she stopped growing, and spots appeared on her teeth. When her rheumatologist left, they waited for a replacement and temporarily stopped the injections. Her hair starting growing again, she got taller, and she lost her baby teeth but the Muckle-Wells’ rash started to return. When they received a new pediatric rheumatologist she was put back on Kineret.
Skyelah still has symptoms like walking stiffly at times, and she often does not seem to have the energy of other kids. She is home schooled and Angela keeps her indoors a lot trying to limit her expose her to germs. Angela started a Facebook page to connect with others who have had their lives effected by MWS.
She is glad to have assisted a few families in their Muckle-Wells journeys but nevertheless feels the isolation that so often comes with such a rare condition. She has never met another parent of a child with MWS.
All images by Angela Dennis Rudd
