Parents Talk Blog

When disagreements between medical professionals and advocacy for rare diseases result in the wrongful removal of children

              When disagreements between medical professionals and advocacy for rare diseases result in the wrongful removal of children  By: Dr. Jessica Nitschke – Research Fellow at Stellenbosch University Three years ago, Kendal’s two young sons (then aged 4 and 6) were undergoing care for life-threatening genetic conditions in a… Continue Reading »

When Medicine Attacks Motherhood

mom comforting child

By. DM Sullivan My phone has been blowing up all week. It happens every May. This year it seems to be a little more intense, but I know the reason – Mother’s Day. I am a rare disease mom and patient advocate. I have spent the last ten years supporting families who live with rare,… Continue Reading »

Why Even Fame Can’t Shield Jameela Jamil From The Ugly Truth About Ehlers Danlos Syndrome

By DM Sullivan  2019 brought much hope to the long-silent-suffering Ehlers Danlos Community when Lena Dunham, Jameela Jamil, and SIA revealed their EDS diagnoses. It felt like a celebrity endorsement of sorts. EDS suddenly went from “what?” to the “disease du jour” and was all over social media and pop culture news programs like Entertainment… Continue Reading »

Why Complex Medical Families Are Grateful To Justina

By DM Sullivan This week, the long-delayed Justina Pelletier lawsuit goes to court.  Rare disease and complex medical families are watching very closely because since 2013 when Justina was taken into state custody after a disagreement between her parents and doctors at Boston Children’s Hospital, things have seemed to get worse not better. Rare disease… Continue Reading »

Why Grey’s Anatomy Did Not Blow The Ehlers Danlos Episode

By DM. Sullivan ABC’s medical drama Grey’s Anatomy’s recently aired an episode, Falling Slowly, which featured a story line about a young patient with Ehlers Danlos Syndrome, and a grateful EDS Community has been abuzz on social media ever since. Thank you for finally giving us a voice! Validation at last! Awareness! Well, sort of……. Continue Reading »

What A Patient Advocate And Medical Ethicist Wants NBC To Know

To The NBC Television Network, As a patient advocate and medical ethicist that works with patients in the Mitochondrial Diseases community, I am writing to express my extreme concern and dismay regarding the “Chicago Med” episode that aired last night of February 2, 2016, on your network. This episode covered a patient who presented with… Continue Reading »

Why NBC Failed The Mito Community – TWICE!

Dear NBC It is beyond ironic that you would choose Rare Disease Month to insult families living with the rare condition, Mitochondrial disease. The Mito Community watched Chicago Med last night, with great hope, that you might help to raise awareness of the devastating effects of this complex, disabling, and sometimes fatal disease that impacts… Continue Reading »

PTSD and Chronic pain

Dealing with chronic illness and navigating the medical system can be extremely stressful on families. When a child has a condition that is not easily recognized, treatment options are not clear-cut, or required modifications are not well understood, it only adds to the pressure.  Sadly, many TCAPP kids have experienced and been diagnosed with post-traumatic… Continue Reading »

Paving The Way! Back To School For Kids In Pain

When a child is living with pain and chronic health issues, back to school can be a time of mixed emotions and added logistics for parents to navigate. I woke up this morning, ignored the pit in my stomach and made THAT call. You know, the call to the Special Education Director to give an… Continue Reading »

That Space Between Us

You will always be my baby, my child, my soul – you are part of me. Your challenge is my challenge, your illness is my illness, and your pain is my pain. I would give anything to trade places and take what you must endure each day. I would do anything to make all the… Continue Reading »