Women with multiple sclerosis (MS) who have children experience significantly longer waits before receiving a diagnosis than women without children, according to a new U.S. study. On average, each child was associated with an additional 1.28-year delay in diagnosis. The delay was even longer among women whose symptoms…
parenting
When Jill Blackburn’s daughter, Sierra, was diagnosed with pediatric multiple sclerosis (MS) at the age of 15, Blackburn had trouble finding sufficient support and resources. She eventually joined a relevant Facebook group, which she evolved into a nonprofit organization, the Pediatric Multiple Sclerosis Alliance. She now serves as…
“The Longest Shortest Time.” The title of this parenting podcast says it all. How can it feel like your kids will never outgrow a stage, while simultaneously being way bigger than you remember them being just yesterday? Living with a chronic disease like multiple sclerosis (MS) reminds me…
Sheila Hofmeister and her husband, Rick, stand behind the wheelchair of their son Ben Hofmeister, whose three sons, Sterling, Jule, and Monte, are pictured from left to right. (Photos courtesy of Ben Hofmeister) Day 30 of 31 This is Sheila Hofmeister’s story: Note: Multiple Sclerosis News Today columnist…
Karly Isaacson’s mother, Donna Ball, laces up Karly’s dress for her wedding last summer. (Photos courtesy of Karly Isaacson) Day 24 of 31 This is Karly Isaacson’s story: When I think of empowerment and multiple sclerosis (MS), I think of my mom. I had my first MS…
Sterling Hofmeister is pictured here at 6 months, carried in a backpack by his father Ben Hofmeister. (Photos courtesy of Ben Hofmeister) Day 15 of 31 This is Sterling Hofmeister’s story: Sterling Hofmeister, far right, is pictured with his brothers and father in 2018. My name is Sterling…
When I was initially evaluated for multiple sclerosis (MS), I was asked if I had a family history of the disease. To my knowledge, I did not. Once I received my diagnosis, one of the first things that crossed my mind, after recovering from the initial shock…
This morning, at an unholy hour, our family awoke to the sound of alarm bells. Well, not bells, but rather the gentle yet insistent sound of one of Alexa’s alarms. Actually, we changed the name of our bedroom device to Ziggy, so we can’t simply roll over, still…
Einstein said that time is relative, and as I age (gracefully, I hope), I’ve found that to be true. For example, I frequently find myself referring to events that occurred a decade or more in the past as happening “just the other day.” In my mind, I’m still…
Dr. April Bee’s mother taught her, through words and actions, to embrace people for who they are. (Courtesy of Dr. April Bee) Day 25 of 31 This is Dr. April Bee’s story: Mama was bold and audacious. She cried with me when I cried. She laughed at things I…
Photo courtesy of Manuela Lama Day 1 of 31 This is Manuela Lama’s (@manuela.p) story: Caring for someone with multiple sclerosis can be challenging, exhausting, and stressful. As a single mother of a daughter with MS, I have been not only physically tired, but, even more…
The psychological distress of a parent whose child is found to have multiple sclerosis (MS) may directly impact the quality of life of the child. That’s according to a new study that revealed a worse health-related quality of life (HRQoL) in MS children after their diagnosis. These findings support…
Children born to women with multiple sclerosis (MS) are not at a higher risk of brain disorders than are children whose mothers don’t have this disease, an observational study reported. However, children born to women with a family with a history of other autoimmune conditions and brain disorders, or…
The MS Trust welcomes adolescents with a connection to multiple sclerosis (MS) to join as reporters for its YouTube channel, the U.K. charity announced. Since its April 2018 launch, MSTV has featured young people with MS or those close to them sharing their experiences and first-hand knowledge through…
Keeping It All in the Family
I’ve never done this before, but I’m dictating this column to my wife. She has many attributes, among them being trained as a secretary many years ago. We went to the same further-education college when we were both in our late teens, but never met while there. I think she…
To empower and support prospective mothers with multiple sclerosis (MS), MyHealthTeams — a free social network for people with chronic medical conditions — and pharmaceutical EMD Serono have launched the online Family Planning Resource Center. The new center operates within the network’s MyMSTeam, and is sponsored in…
Rutgers Health is leading the Pediatric Multiple Sclerosis and Demyelinating Diseases Program, the only program in the state of New Jersey designed specifically to support children with multiple sclerosis (MS). The support program seeks to promote children’s access to cutting-edge therapies and clinical trials, and to educate…
There is nothing worse than being diagnosed with a disorder that you know nothing about. While it was extremely difficult for me to take in, my parents also were affected. I had never thought about how my parents felt about my multiple sclerosis (MS) diagnosis and what I have…
The journey of chronic illness has taught me that our families are greatly affected by our illnesses. Spouses, parents, siblings, and many others can attest to their personal stories of loving someone who is chronically ill. My inspiration for this week’s column was a discussion I recently had with…
Teach Your Children Well
As an advocate for the multiple sclerosis community, people often ask me what it’s like being a mother while living with MS. My quick response is, “Joyous!” But I understand the questioner is looking for something more. They want to know how to…
After I wrote about pediatric MS earlier this month, a reader commented: “I think it would behoove your editorship to follow up to address to audiences…symptoms that typify the early-age demographic.” That’s a good point. So, I drilled deeper into how MS is handled in people younger than…
MS Can Be a Kids’ Disease, Too
The age at which a person is diagnosed with MS is usually between 20 and 50, according to the National Multiple Sclerosis Society. But it can be diagnosed in people much younger. In fact, of the estimated 400,000 people with MS in the United States, 8,000-10,000 are…
Father’s Day is Sunday, June 18, in the U.S. There are a lot of good fathers out there, but one I wanted to tell you about is my friend Jason Clark. He is a caring husband to his wife, Jenny, and an amazing father to his four children.
I am well aware of the importance of a mother, or a mother figure, and the significant role she has in the lives of her children and community. I am blessed to have an awesome mother who has profoundly shaped my life. It is her love, guidance, patience…
I Have MS. Do I Tell the Kids?
It’s a question that nearly every MS patient faces. When do I tell my children about my multiple sclerosis, and what’s the best way to do it? In early January I wrote a column about sharing an MS diagnosis. It was prompted by a reader who had told…
Danish children of parents with multiple sclerosis (MS) are not hampered in their educational efforts by illness in the home, according to a study finding these children earned higher grades than their peers through elementary and into their high school years. The study, “Children of parents with multiple sclerosis attain higher…
A study exploring the difficulties parents experience when their child develops multiple sclerosis (MS) found that more support and education — from healthcare and school staff, as well as by parents themselves — is key to easing the burden of a child or teenager with this disease. The study, “Parents’…