Jordan's Guardian Angels’ Post

How do we build a life of meaning and joy when there's a fire-breathing monster living with us? Read my piece in Newsweek for #rarediseaseday2024 and find out. And in the effort to spread awareness, please share if you're so inclined. #merrf @mitoaction #raredisease #careaboutrare #mitochondrialdisease #griefjourney #griefandloss

Reimagining what is possible, together at the 2023 NORD Breakthrough Summit! National Organization for Rare Disorders

I have frequently experienced that a noisy environment or where there is drumming can trigger the migraine-like headaches of chronic fatigue syndrome. And severe or prolonged forms of the migraine-like headaches of chronic fatigue syndrome can trigger a pain crisis in sickle cell warriors. But I have always observed that by the Grace of God, We will survive and overcome it. To know about this migraine-like headache, chronic fatigue syndrome, and sickle cell disorder, Get the book, THE MANY FACES AND LIVES OF SICKLE CELL - A GLOBAL COLLABORATION, Available on Amazon via this link: https://lnkd.in/eXGgGkcY

🌟 Did you know that Down syndrome is one of the most common genetic disorders, affecting approximately 1 in 700 babies born worldwide? 🌍 💙 Let's raise awareness this Down syndrome Awareness Month by highlighting the prevalence of this condition and promoting a more inclusive society that supports individuals with Down syndrome. 💪 🌈 Together, we can foster understanding and celebrate the unique abilities of those with Down syndrome. Let's break down barriers and champion diversity! 💙 #DownSyndromeAwarenessMonth #InclusionMatters

Mental and Emotional Consequences Children who experience abuse are more likely to develop anxiety, depression, and memory issues. Children may block out traumatic memories. Sometimes, this can lead to memory issues and other problems that affect areas of life beyond the abuse. Those who are abuse by proxy professionals harm children into adulthood. Abuse affects the very DNA of its victims. (A systematic review of childhood maltreatment and DNA methylation: candidate gene and epigenome-wide approaches Stephanie H. Parade,corresponding author#1,2 Lindsay Huffhines,#1,2 Teresa E. Daniels,1,3 Laura R. Stroud,1,4 Nicole R. Nugent,#1 and Audrey R. Tyrka#1,3) Can DNA ‘scars’ from child abuse affect future generations? Child abuse may leave molecular “scars” on the DNA of male survivors, suggesting that health problems related to trauma could conceivably be passed on to future generations, according to a new study led by Harvard T.H. Chan School of Public Health. Researchers examined the DNA of the sperm of 22 men who had suffered some sort of abuse as children. In those samples, the scientists found 12 areas of DNA that had undergone methylation, a process by which a structure called a methyl group is added to a strand of DNA and can influence gene function—a change not seen in the DNA of men who had not experienced child abuse. Studies in mice have found that DNA methylation in sperm cells can cause health problems that can be passed on to offspring. “We already know there are a lot of behavioral mechanisms by which trauma has negative effects on the next generation,” said Andrea Roberts, research scientist at Harvard Chan School and lead author of the study, in an October 2, 2018 article in the Independent. “Trauma obviously really affects the behavior of people traumatized. It often makes them depressed, it gives them post-traumatic stress disorder, and those mental health conditions affect their parenting and affect the kids.” The new findings suggest another possible pathway by which child abuse can affect offspring, she said.

Dravet Syndrome is a rare, genetic🧬, and severe form of #epilepsy - with just 1-2 children out of 500 with epilepsy likely to have this form. Since today is Dravet Syndrome Awareness Day, learn more in our easy-to-read page, here 👇! https://lnkd.in/eq5AUK_s Including links to Dravet Syndrome UK, Dravet Syndrome Foundation Spain, and Dravet Syndrome Foundation (US)! #DravetSyndrome #DravetSyndromeAwarenessDay #RareEpilepsy

When your back is against the wall, and you have no other options with which to protect yourself against murdering mafioso psychopaths, ex-government assassin and one-man wrecking crew, Robert McCall (Denzel Washington), is whom to call for help. He takes out lowlife criminals with as much dispassion as he takes out the trash. The best laid plans of criminal organizations invariably come a cropper when McCall, a mild-mannered bibliophile by day and an avenging angel by night, declares war against them. That, by the way, is the basic plot of the Equalizer 1,2, and 3 movies—and we haven’t even seen the third Equalizer or “Threequalizer” yet. But no matter we’re sure to enjoy the cool karmic comeuppance that Robert McCall so violently, precisely, and expertly dispenses to those who deserve it. Similarly, when patients are up against it from implacable diseases like cancer, and neurodegenerative disorders, what they need are therapeutic agents that act as “equalizers” to level the playing field and to give them a fighting chance. Two potential examples of therapeutic equalizers are nibrozetone (RRx-001) and AdAPT-001 from EpicentRx. Read more here: https://bit.ly/3Esb1nk

Sometimes, sickle cell warriors are just tired of telling people of the sickle cell crises or complications they experience, Especially after the end of a previous sickle cell crisis or complication. Sometimes, we are just tired of dealing with the weirdness of sickle cell disorder. But God is never tired of taking care of us, God will always help us survive and overcome them all, So that we can inform and inspire others to survive and overcome their challenges in life. To know about the various weird sickle cell crises, complications, and (known and unknown) conditions of sickle cell disorder, From the stories of several sickle cell warriors, In different communities, cities, countries, and continents across the globe, Get the book, THE MANY FACES AND LIVES OF SICKLE CELL - A GLOBAL COLLABORATION, Available on Amazon via this link: https://lnkd.in/dfS6MfCe

February is Marfan Awareness Month! Let's shine a light on this genetic disorder that affects connective tissue, impacting the heart, eyes, skeleton, and more. By spreading awareness, we empower individuals and families affected by Marfan syndrome. Medtotes encourages every individual to learn and support those living with Marfan syndrome during this important month. Let's unite in raising awareness and fostering a supportive community for individuals with Marfan Syndrome and their loved ones. Together, we can make a difference! #MarfanSyndromeAwareness #ConnectiveTissueDisorders #RaiseAwareness #MarfanSyndrome #EarlyDetection #MarfanAwareness #Education . #MarfanAwarenessMonth #Support #AwarenessMonth

May is Ehlers-Danlos Awareness Month! My daughter Isabelle struggles daily with the symptoms of EDS. I will never fully understand the level of emotional and physical pain she endures. She is brave and determined to succeed in everything she does. I am so very proud of her and how far she has come and continues to grow into an intelligent and kind young woman despite all the pain. Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect the body's connective tissue, which provides support to various organs, joints, and other structures. The syndrome is characterized by hypermobile joints, skin hyperextensibility, and tissue fragility. EDS awareness month aims to educate people about this condition, which is often misunderstood or misdiagnosed. The goal is to promote awareness, support research, and advocate for those affected by EDS. If you or someone you know has EDS, there are many resources available, such as the Ehlers-Danlos Society, which provides information, support, and advocacy. Let's help spread awareness and support those living with EDS! #EhlersDanlosAwareness #EDSawareness #ConnectiveTissueDisorder #EDSAwareness #EDSMonth #hEDS #vEDS #ChronicPain #HypermobilityAwareness