Katie Kristofic’s Post

A disease is rare when it affects fewer than 1 in 2000 people. #genetics account for 72% of the #rarediseases affecting 300 million people worldwide. All #pediatriccancer is rare cancer. Serving as someone's #caregiver is even more challenging when there is little known about their condition. Learn more: https://lnkd.in/gk6hbAF. #caregiving #rarediseaseday #raredisease #longtermcare #healthcare #geneticdisorders #geneticmedicine #genetherapy

When you’re a #caregiver, subtle changes sneak up on you. Noticing those changes can hit like a ton of bricks and lead to new or deepening #grief. The knowledge that this is normal doesn’t help a whole lot. You do the best you can to find moments of joy wherever you are in the #journey. #caregiving #caregivingfortheelderly #eldercare #aging #hospice #dementia #alzheimercaregivers #alzheimersassociation #griefsupport #caregiversupport #griefjourney #diagnosis #caregivingadvice #cancer #parkinsons #multiplesclerosis #specialneeds

Oof- this example of being a #sandwichgeneration #caregiver. I remember it like it was yesterday and that’s why looking back is such a shock that this was so long ago. The subtle changes sneak up and smack you in the face. Be sure to join us on Facebook, Instagram, and YouTube so you don’t miss our content! #caregiving #caregivingfortheelderly #eldercare #aging #hospice #dementia #alzheimercaregivers #alzheimersassociation #griefsupport #caregiversupport #griefjourney #diagnosis #caregivingadvice #cancer #parkinsons #multiplesclerosis #specialneeds

When someone shows us appreciation, it creates a sense of belonging and connection. This is particularly important in social and work contexts, where feeling part of a cohesive group can reduce the sense of isolation and improve the quality of life. #BeLeukemiaAware #WLD24 #WorldLeukemiaDay #caregivers #patients #friends #family #yourenotalone #WorldLeukemiaDay #Leukemia #PatientAdvocacy #Alan #BeAware #LoveandCare #August Acute Leukemia Advocates Network CLL Advocates Network CML Advocates Network

This is our favorite depiction of #grief. It makes the feeling so much easier to explain to those who haven’t experienced it yet. It shows the weight, the exhaustion, the struggle to stand and put one foot in front of the other. We carry it every day, everywhere we go. #griefjourney #caregiver #griefsupport #caregiving #dementia #Cancer #hospice #caregiversupport #specialneeds #diagnosis #parkinsons #diabetes

Great articles in The Washington Post today highlighting the long #diagnostic #odyssey patients and families with #rarediseases too often suffer through, and where to turn for help. It emphasizes knowledge is power, hope is essential, and #rare #diseases impact the whole family (including siblings!). It hits all the key stats - about 1 in 10 Americans have a rare disease; 80% of all rare diseases have a genetic component and about half of all rare disease patients are children - and about a third of them will not live past their fifth birthday. Only one additional thing I would have loved to see mentioned in the article: how vital incentives like the #rarepediatricdisease #priorityreviewvoucher program or #PRD #PRV program make #drugdevelopment for #rare #pediatric #diseases possible - and how this vital program that has benefitted millions of #children with #rarediseases already is set to expire September 30 of this year unless Congress takes action.

Are you in the #PathofTotality today? Comment below! Today's phenomenon may leave you in the dark during the daytime, but Luminations patient education videos keep patients out of the dark when it comes to the challenging concepts surrounding their disease states and treatment options. Enjoy today's #SolarEclipse, and don't forget to wear your glasses! #Luminations #D2Creative #PatientEducation #PatientEd #PatientEngagement #PatientAdvocacy #PatientAdvocate #Caregiving #Caregivers #Cancer #CancerCaregiving #CancerEducation D2 Creative

The majority of uterine cancer patients are women over 50. Here are the warning signs you need to know https://buff.ly/3LegMbL #allurehomecare #homehealth #seniorcare #seniorhealth #homehealthcare #caregiver #caregiving #cancerscreening #uterinecancer #womenshealth

A life-limiting #cancer diagnosis can be incomprehensible to a patient who has just started creating a family. As a #healthcareprofessional referring your patient for additional support to process all the parts of this devastating news can be so beneficial: ❓You may have had patients with a #terminaldiagnosis before, but each patient faces this anew and may not know what questions they need to ask. Mummy's Star can provide advocacy support , ensuring a patient is able to liase comfortably and effectively with their care team. 💙Sharing the news and having conversations about #death and #dying can be painful and difficult, especially when involving children. Fruitfly Collective can provide advice on speaking to children about cancer and Mummy's Star can support families in #memorymaking. 💻Practical issues, such as creating a #will, appointing a health power of attorney, forming an advanced statement, etc. can be overwhelming for a patient. Organisations that can help include @Compassion In Dying and Dying Matters UK Hospice UK 🕯️Patients may be eager to lay out their wishes for after their death, or they may find it difficult to discuss. Organisations that can help them include St Cuthbert's Hospice 'Eveything In Place' programme and 'The Little Book of Life Admin' by @Spacemasks 📽️Find video sessions with some of these amazing organisations on our website and YouTube channel. 👇Please SHARE and TAG other amazing organisations providing end of life support in the comments. #endoflife #cancerandpregnancy #incurablecancer #NHS #CNS #cancersupport #oncology

World Spina Bifida and Hydrocephalus Day: "Bridging Gaps Together" 🌍 **Today, on World Spina Bifida and Hydrocephalus Day,** we unite under the theme *‘Bridging Gaps Together.’* This day is not just about raising awareness—it’s a call to action for all of us, especially in the field of pediatric healthcare. As a pediatric nephrologist, I work with children who have spina bifida, many of whom face serious bladder and kidney challenges. From managing bladder dysfunction to preventing infections and protecting kidney health, these children require specialized, long-term care. Unfortunately, in India, there are still significant gaps—particularly in rural areas—where access to timely diagnosis and nephrology services remains limited. These gaps can have lasting consequences, as untreated bladder issues can lead to chronic kidney disease, which deeply affects a child’s quality of life. But this is where *we*—healthcare professionals, policymakers, community members—can make a difference. Today, I urge all of us to take meaningful steps: - **Raise Awareness:** Share information on spina bifida and kidney care so more families are aware of the risks and solutions. - **Support Access to Care:** Advocate for better healthcare infrastructure and access to specialized nephrology services, especially in underserved areas. - **Offer Emotional Support:** Reach out to families managing these conditions. A kind word or gesture can make a world of difference in their journey. Together, we can bridge these gaps and ensure every child with spina bifida receives the nephrology care they deserve, no matter where they live. Let’s work toward a future where every child is empowered to thrive, with healthy kidneys and bright futures ahead. Useful Links: Kidney Foundation for Children https://lnkd.in/gGHBPPG8 Spina Bifida Foundation Santosh Karmarkar https://lnkd.in/gY_pDU5D #SpinaBifida #Hydrocephalus #WorldSpinaBifidaDay #PediatricNephrology #BridgingGaps #KidneyCare #HealthcareAccess #Advocacy #SupportFamilies #HealthForAll #WSBHD24