Have you ever thought about rising above a challenge and contributing meaningfully to your community?
There are many ways you can positively impact your society but finding the right path may be difficult. That is why we are delighted to introduce to you a social innovator and a visionary leader, who has more than a decade of experience in leading and transforming a non-profit organization around the world. Jill Blackburn is the president of the Pediatric Multiple Sclerosis Alliance (PMSA), a non-profit organization that is dedicated to improving the lives of children with multiple sclerosis, a potentially disabling neurodegenerative disease that affects the central nervous system. Under her leadership, PMSA grew from a modest local group to an organization with global presence. Jill is an ardent advocate who promotes the awareness of multiple sclerosis (MS), contributes to MS research, and provides support for the MS community. As a medical imaging specialist and a mother of a child with MS, she has firsthand experience of the challenges and opportunities that people with MS face in their daily lives. Jill’s story is one of resilience, courage, hope, and inspiration. In this blog post, we will learn more about her journey, her accomplishments, and her vision for the future of MS care.
Wande: Hello Jill, it is a pleasure talking with you this morning. Please introduce yourself to our readers.
Jill: My name is Jill Blackburn. I work at a large neurological hospital as an imaging tech, I do CT (computed tomography) and MRI (magnetic resonance imaging), and I have worked there for about 27 years now. I have also been an admin of the Facebook group since 2013 and president of PMSA since 2015.
Wande: So, that means you have two full-time jobs!
Jill: Yes, it does.
Wande: How and when did PMSA start?
Jill: PMSA was founded as a Facebook group in 2011 by Elin Phillips who had been diagnosed with MS. Elin was a primary school teacher and before her diagnosis with MS, she started a non-profit organization that delivered angel dolls to children in the hospital; most of the children she visited at the hospital had been diagnosed with cancer. After her MS diagnosis, she attended a seminar for people newly diagnosed with MS at her local chapter in Texas. It was there that she met a lady who was attending the seminar for her 4-year-old daughter who had been diagnosed with MS. At that point Elin changed her thought process away from pediatric cancer to pediatric MS and that’s when she started the Facebook group.
Wande: It’s amazing that PMSA started as a small Facebook group, and it is now a huge organization.
Jill: Yes, PMSA grew exponentially, and it is now all over the world! It’s been an amazing growth.
Wande: Can you please share your PMSA journey.
Jill: My daughter was diagnosed in 2012 and I started doing some research. At that time, there was very little information or resources on pediatric MS. I then found this Facebook group and became heavily involved. In 2012, Elin created a non-profit organization and the membership on the Facebook group grew from about 100 to over 800 people as our group extended internationally. We have families that have found us from all over the world. Around that time, Elin attended an ACTRIMS (American Committee for Treatment and Research in Multiple Sclerosis) conference, where she connected with a nurse who worked in a pediatric MS clinic. It snowballed from there; this person knew another person and that person knew two more. I joined the board for the non-profit organization with Elin. As her MS progressed over the next couple of years, I took on more and more of the duties and then she finally said, “enough is enough, I need to pass the torch.” We then got some additional board members and decided to see how much more we could expand, including attending some of the neurology meetings around the United States.
Wande: Can you elaborate on your personal connection to MS?
Jill: My daughter at age 15 started experiencing some odd symptoms but I wasn’t super concerned. I took her to see her pediatrician who did her physical examination and scheduled my daughter for some routine lab work. During her physical exam, she was palpating around my daughter’s neck and discovered that she had some enlarged lymph nodes in her neck and that her thyroids were enlarged. Due to her age, the concern at that
point was lymphoma or maybe thyroid cancer. We were then referred to pediatric endocrinology to assess the thyroid and ordered a thyroid ultrasound. Even with me being in the medical field, it took us almost 3 months to get an appointment with a pediatric endocrinologist at that time. Once we were able to see the pediatric endocrinologist, she mentioned that my daughter’s prolactin levels were off the chart, which could indicate a pituitary tumor. The endocrinologist set us up for an MRI and then did a needle biopsy of her lymph nodes and her thyroid to try to get some additional information. I sat at the MRI scanner watching the scan and, as the images were popping up, I saw all these little white spots on her brain scan. I had scanned patients with MS before and was fully aware of what it looks like, but I was so confused because this was my 15-year-old. I asked a neuro-radiologist that I work with to look at the images, and he is the one who actually told me of her diagnosis. He said there was a pituitary tumor there, but my daughter had MS. He said the white spots were very classical lesions of MS. You could have pulled out the rug from underneath my feet at that moment. As I looked back at the patients I had seen throughout the years, most of them in their 50s and 60s, confined to their wheelchairs, and dealing with various disabilities, all I could think of was my own daughter being in their position in a matter of time.
I delved into research and attended a newly diagnosed seminar for MS at a local chapter with the National MS Society. My daughter accompanied me to the seminar, where we joined a round-table discussion primarily consisting of women in their 40s and 50s. I noticed some of them were using canes, walkers, and one was in a wheelchair. My daughter was terrified upon seeing this and it made me horrified. The moderator started asking each person to share their experience, beginning with the person on the right and ending with us on the left. When it was my turn, I explained that it was not about me but my daughter who had been diagnosed with MS. Everyone seemed surprised as they were unaware that children could also get MS. It was a troubling introduction to pediatric MS, and I aim to inform parents that with a first diagnosis, they should not make the same mistakes I did. This is my goal with PMSA.
Wande: What would you tell parents who have kids that have been recently diagnosed with MS?
Jill: Accessibility of the internet has significantly improved over the past 10-12 years, but I always caution parents against relying on Google as their primary source of information. It's usually the first thing I tell them because searching online can expose you to the worst-case scenarios you can possibly imagine. Instead, I recommend visiting our website and our Facebook group where we have shared reliable sources for you to explore. Take a look at reputable websites like the National MS Society and MS UK to find accurate and trustworthy information. Don’t go to Google, don’t head to WebMD; you may not get the right information. The other thing is, don’t listen to the people who tell you, “Oh, I have a friend who has MS, and she’s in a wheelchair.” Don’t listen to all the horror stories. With the new medications around and early diagnosis, the research that is going on with targeted treatment has increased ten-fold even in the last year, and the prognosis is so much better now for our kids.
Wande: I know right, it’s just that the first instinct is usually to learn more by surfing the internet.
Jill: It's interesting how most parents stumble upon our group through an online search for pediatric MS. We're one of the top results that come up, which is a good sign.
Wande: How do parents deal with the symptoms of their children with MS?
Jill: : MS is known as a snowflake disease which means that no two people have the same disease course or the same symptoms. My daughter has been lucky enough not to experience optic neuritis, a common symptom of MS in children. However, many other parents in our group have dealt with it and are happy to offer advice. Fatigue is a common issue with MS, and we often discuss ways to manage it when kids say they're too tired for school. It can be difficult to determine whether it's a simple case of not wanting to go or if there is a genuine issue. Parents often seek advice from one another and share strategies they have employed in the past, particularly regarding school-related matters. As a young person with MS, your concerns are not centered around work, family, or raising children. Instead, you are preoccupied with driving, attending prom, graduating from school, and having the opportunity to pursue higher education.
It is important to work with schools to address a 504 or an IEP plan to give your kid the best possible chance at success. Our group is made up of parents with a diverse range of backgrounds and expertise. We have some parents in our group who are special education teachers, attorneys, a physical therapist, a speech therapist, a dietician, me who is in imaging, and some who are nurses. Our group has such a great scope of wisdom to draw from. There is rarely ever something that a parent asks that somebody can’t help talking to them about.
Wande: That is such a blessing too! Just one group and you can get your answers.
Jill: Huge one! Well, if we don't have the answers, we can still point you in the right direction with our resources. And to be clear, we always start by saying, "I'm not a medical expert, so please consult your physician first. But in the meantime, here's something you can try."
Wande: You mentioned IEP plan, what does it mean?
Jill: An IEP, also known as an Individualized Education Plan, is a vital component of a federal program that helps children with disabilities succeed. Additionally, the 504 Plan for the Americans with Disabilities Act accommodates either the child to the environment or the environment to the child. For example, my daughter was allowed to wear sunglasses in the classroom as the artificial lights would bother her eyes and give her headaches. She could sit in the front row to see the board more easily, and near the door for easy restroom access. Due to her MS, one of the lesions affected her bladder, causing her bladder issues. In some cases, students are allowed extra time on tests. The goal is to offer anything that can provide quality education for these children.
Wande: This is a great program. What would be your advice to parents on participating in this type of program?
Jill: Hmmm... I'm aware that some parents have already pursued accommodations for their children with MS, while others have not. Initially, we didn't explore any accommodations for our daughter because, at that time, we were unaware that she had MS. The disease was discovered incidentally while seeking answers for another condition. She wasn’t experiencing any of the typical symptoms like optic neuritis that parents often mention when their kids are first diagnosed. So, we assumed it might have a benign course and never progress to that point. I often share my experience with new parents who have just received a diagnosis for their child. I usually advise them not to follow in our footsteps. We made the mistake of waiting almost a year before starting medication for our daughter, thinking nothing would happen. In retrospect, our daughter had been showing symptoms since she was 9 or 10 years old, but we didn't realize what was happening at the time. Eventually, we filed for accommodations, which can be tricky because there are specific requirements to follow. You must inform the school district about the necessary accommodation. However, if your child hasn't exhibited any symptoms yet, you won't know what to ask for. So, we created a broad template that could guide parents on where to start. This doesn't necessarily mean that your child has to start using these accommodations right away. There were several accommodations that my daughter didn't use until the end of high school when certain things became a challenge, but others weren't. Therefore, we recommend that you put the plan in place now and accommodate it as you go.
Wande: How is your daughter doing now?
Jill: She's just turned 26! I can hardly believe it's been 12 years since her diagnosis, and I have to say she's doing great despite her rough start with MS. I take a part of the blame for that, but I always tell parents not to beat themselves up for not knowing better when they first start out. In any case, she's come a long way, and I'm proud of her. During the first year and half, she experience numerous relapses and developed several lesions in her brain and spine that affected her bladder. Some of her major challenges include memory issues, fatigue, chronic numbness in her left leg and her right arm, headaches, and speech aphasia where she sometimes struggles with word finding and selecting the right words. If you were to meet her on the street, you would never guess she has MS. She truly embraces life. In fact, at the beginning of the pandemic, she made a bold move and relocated halfway across the country with her high school friend. I have to admit, it worried and panicked me every day, but she has managed remarkably well. She's doing just fine! And I believe that's the case for most of our kids.
Wande: This is so pleasing to hear. I am happy she is doing fine.
Sources
Main symptoms of Multiple Sclerosis image
Child head with brain image