🦓Growing up with a sibling who has a rare disease can deeply impact a child’s health and well-being. A 2021 study revealed that these siblings often experience worse mental health and strained family relationships compared to their peers.
Here are key strategies from Dr. Albert Freedman, a psychologist specializing in rare diseases, on how to better support siblings in these challenging situations:
1. Maintain honest and age-appropriate communication with siblings about the rare disease. Understanding the condition helps siblings feel more secure, less confused, and more involved.
2. Encourage parents to spend quality one-on-one time with each sibling. This can help mitigate feelings of neglect and reinforce the sibling’s bond with his or her parents.
3. Recognize the importance of providing siblings with safe spaces to express their emotions.
4. Emphasize the importance of allowing siblings to pursue their own interests and hobbies. Activities that are separate from their brother or sister’s care help siblings develop their own identities and strengthen their skills.
5. Accept help from their community. Friends, neighbors, and local organizations can provide invaluable support, such as driving siblings to activities, which can alleviate some logistical burdens on parents.
6. Be aware of signs of emotional distress in siblings. Siblings of children affected by rare disease often keep their concerns to themselves because they don’t want to add an additional burden to their parents.
Given the unique and complex needs of those with a rare disease, healthcare providers can play a crucial role in mitigating their mental health challenges.
📢Here are key strategies, Dr. Albert Freedman, the psychologist behind Rare Counseling shared in an interview with Rare Disease Advisor:
👂Listen actively: Taking the time to listen to patients and their families is invaluable. In healthcare systems where time is limited, this act alone can significantly reduce stress and anxiety. Patients need to feel heard and understood beyond their clinical symptoms. “Listening goes a long way,” Dr. Freedman said. “To listen and to get to know the person is a great gift in any doctor-patient relationship.”
🤝Build personal connections: Recognize that patients are more than their disease. Developing a relationship where patients feel known as individuals can foster trust and safety, which are crucial for their mental health.
🔍Acknowledge limitations and learn: Doctors should openly acknowledge the limits of their knowledge regarding rare diseases. “There are thousands of rare diseases, and we can’t expect every physician to know what they all are,” Dr. Freedman said. It’s critical to be honest with patients about what they know and don’t and show a willingness to learn more about their disease. This transparency helps build trust and reduces patient anxiety. “To be open to learning is really important because many of our rare disease patients are anxious when they find that they know more about their disease than the doctor does,” he said.
📚Seek and coordinate resources: When doctors cannot provide specific care due to a lack of knowledge about a rare disease, they should actively help patients find specialists or resources who can. Care coordination across specialties and healthcare providers can alleviate the burden on patients and their families. “Our healthcare systems are very siloed. Healthcare professionals should help coordina
Inspiring Others With Pompe to Stand Ironman Strong
Taking on the #Ironman challenge in South Africa wasn't just about proving himself - It was about showing the world what a person with Pompe disease can do.
"Through unwavering determination and indomitable spirit, I used encouragement from others to propel me forward, and I aimed to inspire countless people along the way. It took true grit and resilience, but in the end, I hope my journey to complete this event will serve as a powerful reminder that no obstacle is insurmountable if one dares to face it head-on."
Read more in Bruce Campbell's latest #PompeDisease patient perspective: https://www.rarediseaseadvisor.com/patient-columns/inspiring-others-pompe-stand-ironman-strong/
#PompeStrong
Finding Care for HDFN Is a Difficult Task
For those with Hemolytic Disease of the Fetus and Newborn (#HDFN), finding care isn't that simple. Often, specialists are few and far between, and in the state of Texas, there are only two. In a recent column, Taylor Jeans opens up about the challenges of an HDFN diagnosis and pleas for an increase in care.
"In the entire state of Texas, there are only 2 doctors who are skilled enough to treat patients with HDFN. When I went to a doctor’s office in Dallas, the doctor was out on vacation and my child’s condition was critical. Hence, they had to call the only other specialized doctor in the state and transfer me to Houston."
Read more from Taylor here➡️ https://brnw.ch/21wLfuu
#RareDisease #obstetrics #FetalMedicine #MaternalFetalMedicine #Gynecology #Alloimmunization
Introducing Rare Disease Companion
Just as many individuals with rare diseases and disorders suffer from unmet medical needs, they also encounter significant informational gaps on the web. Patients and their families often search in vain for answers to their questions, finding instead content tailored for doctors, researchers, and investors — but not for patients and caregivers.
Haymarket Media ’s Rare Disease Companion network of websites seeks to address this issue by providing patients and their families with news, educational materials, and trustworthy insights. Our goal is to deliver the answers and support you need in language that is accessible and understandable.
Explore our Companion Sites here:
HDFN Companion - https://www.hdfncompanion.com/
PBC Companion - https://www.pbccompanion.com/
SM Companion - https://www.smcompanion.com/
#RareDisease #rarediseasewarrior #RareDiseaseCommunity #careaboutrare #RareDiseases #rarediseasesupport
🩸Today is #WorldHemophiliaDay.
Rare Disease Advisor joins the global community to raise awareness for those with #BleedingDisorders.
🔎To learn more about #Hemophilia visit https://brnw.ch/21wIUaL.
#Hematology #HemoChat #HemophiliaCommunity #HemophiliaStrong #CareAboutRare #NotThatRare
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