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  2. I'm Carmen G, 24 yrs old. I have Congenital heart defect is pulmonary atresia with dextrocardia and I have had a bidirectional Glenn and Fontan as surgeries. So I am considered to be a single ventricle with Fontan. I always felt alone in my conditions when I growing up. Telling people about my scars, why I had a cardiologist so young and why I did the pledge allegiance "wrong". I never really had anyone I could relate to just my poppop cause he had heart surgeries but nothing compared to me. We use to compare pain haha When weather was changing or scar tissues were moving. But I'm excited to meet people and relate to people who actually understand what I am going thru. Right now I'm 24 and finally found a adult cardiologist who understands me. She is Dr. Shah in VCU in Richmond, VA ( highly recommend ) As my health I'm doing alright just need to work on exercises to work up my legs and heart muscles. I need to work on vitamins as well and keep an eye on my protein which is a little high but not too bad. I learned I have varicose veins in my left leg so I need to compression socks. As of now I am good but I don't know what the future holds but we'll see. Thank you again
  3. Earlier
  4. Join ACHA for tomorrow night’s webinar (Wed., 10/12/21 from 7-8 pm EDT) and learn how to take control of your medical records and learn why it's important that you do. Register here - http://ow.ly/HU9650Gq0y6.
  5. Join ACHA for tomorrow night’s webinar (Wed., 9/29 from 7-8 pm EDT) and learn how to set healthy nutritional goals. Register here - http://ow.ly/ZSvY50Gi0R6.
  6. Join ACHA for tomorrow night’s webinar (Wed., 9/22 from 7-8 pm EDT) if you want to know more about the relationship of genetics to congenital heart disease (CHD). Register here - http://ow.ly/CL8r50GdMjN.
  7. Hi Paula, I was born with Tetralogy of Fallot. My first surgery was at 4mo old and I had my pulmonary valve replaced when I was 27. I am now due to have this valve replaced likely within a year. You have been through so much. I am happy for you that you recovered. I have wondered the same thing or at least I think I am wondering the same thing as you. I have worried about my lack of ability to protect my breast over the years as I've needed diagnostic imaging for my heart condition. Is this what you are referring to? I've had CT, MRI, angioplasty, contrast, countless X-rays of my lungs pre and post op. Just wonder if it all adds up to an increased risk of a mutation resulting in breast cancer. I have wonder this for some time. When I saw your post, I had to reply. I do not know if there is causation here, but perhaps there is correlation between the increased exposure and cancer risk. Thank you for sharing your story. Thanks, Veronica
  8. Blalock Taussig Shunt in 1959. Tet corrected by Dr John Kirklin at Mayo Clinic in 1962.
  9. Join ACHA tomorrow to learn how to find ACHD care when it's not nearby. Register here!
  10. Want to learn more about the current status of research in ACHD and the vital role patients play as partners in the research process. If so, you'll want to attend ACHA's webinar this Wed night, 8/4/2021. Register today at https://bit.ly/2TYVmrA.
  11. Heidi: I hope some of the meds are to help your ventricle work as well as it can and to do the same for the left ventricle. an enlarged or mis-shaped ventricle in no fun. I hope the meds help. They can slowly help and buy time for a correction I hope is possible. Please know you are not alone.
  12. I was born with a Coarctation of the Aorta and a bicuspid Aortic Valve. At the time, 1974, I was the smallest baby to survive the initial surgery. I was 5 days old and weighed roughly 3 pounds. The coarctation was a complete obstruction, and as the ductus arteriosus closed, I turned blue from the waist down. It was with the skill of a determined surgeon, and my own fighting spirit that I survived the surgery. I needed a great deal of care, needing small amounts of formula every few hours. My parents were quite a team. I grew and gained weight slow and steady. I did well, and when I was three and a half, I was able to have a further widening of the coarctation. It was a "good enough" surgery until I grew more when a definitive surgery could be done. Two angioplasties were done at Boston Childrends hospital when I was thirteen and seventeen to buy additional time. I was able to live a pretty normal life. My parents did not treat me any different from my siblings. I would stop to rest when playing as I needed to do so. Team sports were not something I could do, but intramural sports were fine, and I was allowed to rest as I needed to. I knew I was different, but I found supportive classmates and teachers. I was able to finish college and find employment as is usually done. I had annual follow-up and multiple blood pressure meds. My final surgery came when my bicuspid aortic valve started to fail when I was 39 years old. With help from another skilled and courageous surgeon, I received an on-x carbon aortic valve and aortic bypass graft to provide an extra-anatomic aorta. I now have better control of my blood pressure with a low dose of one blood pressure medicine along with warfarin. I am able to walk without needing to rest for 2 miles. So I am living a normal life..:) I hope this helps give hope to parents of children waiting for surgery and people waiting for surgery. God bless and please stay strong!
  13. 24 Hours Left to Register for the ACHA Virtual Empowerment Symposium! Registration Closes at 12:00 noon EDT Friday, 7/9/2021
  14. Webinar: Ask a Peer Mentor: LGBTQ+ and the ACHD Experience Date: Wednesday, June 30, 2021 Time: 7 p.m. – 8 p.m. EDT Presenters: Stephen Cook, MD, FACC and ACHA Peer Mentors Ken W. and Kim E. About the Webinar As part of ACHA's ongoing commitment to diversity, equity, and inclusion, it is important to create opportunities to discuss topics pertinent to every patient in the CHD community. To conclude Pride Month, join Dr. Stephen Cook and ACHA Peer Mentors Ken W. and Kim E., both adults living with CHD, as they discuss their own personal experiences as part of the CHD and LGBTQ+ communities. While CHD affects 1 in 100 individuals regardless of socioeconomic status, race, ethnicity, or gender, each person's journey with CHD is different. In addition to type of defect and surgery, personal experiences and attributes, such as race, sexual orientation and gender identity can also influence how someone accesses and receives healthcare. According to the latest Gallup poll, around 5.6% of U.S. adults identify as LGBTQ+. Underrepresented minorities, including not only sexual and gender minorities, but also adults with CHD, often face disparities and bias in healthcare resulting in additional stressors that may impact patient well-being and health outcomes. Register for this webinar today to learn more from our speakers and for the opportunity to ask them questions. About the Speakers Stephen Cook, MD, FACC, is the Director of the IU Health Adult Congenital Heart Disease Program in Indianapolis, IN. Dr. Cook served on ACHA’s Task Force on ACHD Health Disparities and Diversity and has also been selected by the American College of Cardiology to serve on the Diversity and Inclusion Committee. The goal of this committee is to harness the power of diversity to advance patient care and improve health equity among unique patient populations. Ken W. was born in 1981 with tetralogy of Fallot and like many adults with CHD, thought he had been fixed and was lost to cardiology care as an adolescent. He returned to care in August 2011 following a biking accident. Ken became a Peer Mentor to help other adults with CHD and their family members navigate the challenging and overwhelming aspects of life with congenital heart disease. Kim E. was born in 1966 and is a mother of three with transposition of the great vessels, pulmonary stenosis, and ventricular septal defect. Over the years, she has had multiple surgeries. Kim has been involved with ACHA for many years and became a Peer Mentor to support others on their journey. About the Adult Congenital Heart Association The Adult Congenital Heart Association (ACHA) is a national not-for-profit organization dedicated to improving the quality of life and extending the lives of adults with congenital heart disease (CHD). ACHA serves and supports the more than one million adults with CHD, their families, and the medical community—working with them to address the unmet needs of the long-term survivors of congenital heart defects through education, outreach, advocacy, and research. For more information about ACHA, contact (888) 921-ACHA or visit www.achaheart.org.
  15. until
    Announcement (February 24, 2021) The safety of our ACHA event attendees has always been of the utmost importance. With that in mind, and in light of the ongoing COVID-19 pandemic, we are announcing today that we have rescheduled our 9th National Conference, which will remain an in-person event. We hope you will join us June 23-25, 2022! The conference will take place at the same location—the Radisson Blu Mall of America in Bloomington, MN. If you already registered for a previous conference date, your registration will transfer to this new event date. All previous hotel block reservations must be cancelled and rebooked. Please email info@achaheart.org with any questions regarding a previous registration. To still come together this summer as planned, we will host a one-day virtual conference on July 10, 2021. We hope even more of you can join us from the comfort of your own home to experience the community of an ACHA event, as well as the caliber of speakers and presentations that attendees have come to expect at our conferences. More details and registration for this event will be available in March. Please stay tuned! ACHA offers our unique 9th National Conference, from June 23-25, 2022, with two separate educational tracks that anyone registered can attend. The Patient/Family Conference offers attendees the chance to hear the latest information about managing their disease from top national congenital heart specialists. It is also a great opportunity to meet others with CHD and to give and receive support. The Health Professionals Conference is an opportunity for health professionals with a focus on ACHD to strengthen their skills and learn about new strategies for treating their patients and improving their quality of life. This track also brings together top international congenital heart researchers working to move the CHD field forward by developing new treatments for CHD. *We offer CMEs and CEUs at the National Conference. Attendees must register as a medical professional member in order to obtain them. Who: There are two different tracks associated with the National Conference: Patient/Family and Health Professionals. ACHA encourages ACHD patients, family members, teens and young adults diagnosed with congenital heart disease to attend the conference. We also invite ACHD doctors, physician assistants, nurse practitioners, social workers, nurses, fellows and residents to attend as well. What: The ACHA National Conferences offers attendees an opportunity to meet others who are affected by CHD through educational sessions and networking opportunities. Some previous conference offerings included the latest research and educational topics; opportunities to interact with medical providers; panel discussions from the patient viewpoint; and educational lectures about specific defects, self-advocacy, legislative advocacy, newer medical therapies, complementary therapies, 3D printing options, preparing for surgery, family planning/contraception, the challenges and gifts of having a loved one with CHD, navigating insurance, and more. Click here for more information and to register
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    ACHA is excited to continue its partnership with Stanford Health Care’s ACHD Program’s Patient & Family Advisory Council to bring you a quarterly series of virtual CHD Conversations. Join us for patient-led, town hall-style presentations. Register for free today! Presenters: Margaret Goddard, MS, and Julie Fletcher Margaret Goddard and Julie Fletcher serve as Patient Partners on Stanford Health Care's Adult Congenital Heart Disease Patient & Family Advisory Council. Margaret was born with tetralogy of Fallot which led to four open-heart surgeries and an ICD placement. She has three daughters, one son and two grandchildren. Margaret is a business partner with her wife in a psychotherapy practice. Margaret has had great success treating her partly CHD-related PTSD with psychotherapy and has found it to be a life saver in managing mental health and chronic disease. Julie was born with Shone's Complex. She underwent her first heart surgery at two years old and four open-heart surgeries between the age of 6 and 29 years old. In her free time, Julie enjoys walking with her family, playing online video games with her husband and volunteering with fellow "CHD'ers". Julie recognizes the importance of mental health because of the challenges she knows ACHD patients and caregivers face on a daily basis. This virtual presentation is made possible in part by sponsorship support provided by: Janssen Pharmaceutical Companies of Johnson & Johnson Click here to register
  17. Join us as we walk for the more than 2.5 million people living with congenital heart disease (CHD) across the country. Since 1998, the Adult Congenital Heart Association (ACHA) has been empowering and advocating for the 1 in 100 children and adults impacted by CHD. ACHA funds ACHD-specific research grants and is a leading organization in advocating for research at the federal level; has accredited 40+ ACHD programs across 25 states; and offers extensive educational tools, including defect-specific resources, weekly webinars, and a searchable clinic directory. In 2021, we will host walks in 11 communities to raise money for continued research, education and outreach for the CHD community. We’re here to empower adults to take an active role in their cardiac care, to educate parents on the lifelong specialized care their young child will need in the future, and to support young adults through the transition to adult CHD care. We hope you will join us and help us further our impact by supporting ACHA’s Walk for 1 in 100. Click here for more information and to register
  18. Join us as we walk for the more than 2.5 million people living with congenital heart disease (CHD) across the country. Since 1998, the Adult Congenital Heart Association (ACHA) has been empowering and advocating for the 1 in 100 children and adults impacted by CHD. ACHA funds ACHD-specific research grants and is a leading organization in advocating for research at the federal level; has accredited 40+ ACHD programs across 25 states; and offers extensive educational tools, including defect-specific resources, weekly webinars, and a searchable clinic directory. In 2021, we will host walks in 11 communities to raise money for continued research, education and outreach for the CHD community. We’re here to empower adults to take an active role in their cardiac care, to educate parents on the lifelong specialized care their young child will need in the future, and to support young adults through the transition to adult CHD care. We hope you will join us and help us further our impact by supporting ACHA’s Walk for 1 in 100. Click here for more information and to register
  19. Join us as we walk for the more than 2.5 million people living with congenital heart disease (CHD) across the country. Since 1998, the Adult Congenital Heart Association (ACHA) has been empowering and advocating for the 1 in 100 children and adults impacted by CHD. ACHA funds ACHD-specific research grants and is a leading organization in advocating for research at the federal level; has accredited 40+ ACHD programs across 25 states; and offers extensive educational tools, including defect-specific resources, weekly webinars, and a searchable clinic directory. In 2021, we will host walks in 11 communities to raise money for continued research, education and outreach for the CHD community. We’re here to empower adults to take an active role in their cardiac care, to educate parents on the lifelong specialized care their young child will need in the future, and to support young adults through the transition to adult CHD care. We hope you will join us and help us further our impact by supporting ACHA’s Walk for 1 in 100. Click here for more information and to register
  20. Join us as we walk for the more than 2.5 million people living with congenital heart disease (CHD) across the country. Since 1998, the Adult Congenital Heart Association (ACHA) has been empowering and advocating for the 1 in 100 children and adults impacted by CHD. ACHA funds ACHD-specific research grants and is a leading organization in advocating for research at the federal level; has accredited 40+ ACHD programs across 25 states; and offers extensive educational tools, including defect-specific resources, weekly webinars, and a searchable clinic directory. In 2021, we will host walks in 11 communities to raise money for continued research, education and outreach for the CHD community. We’re here to empower adults to take an active role in their cardiac care, to educate parents on the lifelong specialized care their young child will need in the future, and to support young adults through the transition to adult CHD care. We hope you will join us and help us further our impact by supporting ACHA’s Walk for 1 in 100. Click here for more information and to register
  21. Join us as we walk for the more than 2.5 million people living with congenital heart disease (CHD) across the country. Since 1998, the Adult Congenital Heart Association (ACHA) has been empowering and advocating for the 1 in 100 children and adults impacted by CHD. ACHA funds ACHD-specific research grants and is a leading organization in advocating for research at the federal level; has accredited 40+ ACHD programs across 25 states; and offers extensive educational tools, including defect-specific resources, weekly webinars, and a searchable clinic directory. In 2021, we will host walks in 11 communities to raise money for continued research, education and outreach for the CHD community. We’re here to empower adults to take an active role in their cardiac care, to educate parents on the lifelong specialized care their young child will need in the future, and to support young adults through the transition to adult CHD care. We hope you will join us and help us further our impact by supporting ACHA’s Walk for 1 in 100. Click here for more information and to register
  22. Join us as we walk for the more than 2.5 million people living with congenital heart disease (CHD) across the country. Since 1998, the Adult Congenital Heart Association (ACHA) has been empowering and advocating for the 1 in 100 children and adults impacted by CHD. ACHA funds ACHD-specific research grants and is a leading organization in advocating for research at the federal level; has accredited 40+ ACHD programs across 25 states; and offers extensive educational tools, including defect-specific resources, weekly webinars, and a searchable clinic directory. In 2021, we will host walks in 11 communities to raise money for continued research, education and outreach for the CHD community. We’re here to empower adults to take an active role in their cardiac care, to educate parents on the lifelong specialized care their young child will need in the future, and to support young adults through the transition to adult CHD care. We hope you will join us and help us further our impact by supporting ACHA’s Walk for 1 in 100. Click here for more information and to register
  23. Join us as we walk for the more than 2.5 million people living with congenital heart disease (CHD) across the country. Since 1998, the Adult Congenital Heart Association (ACHA) has been empowering and advocating for the 1 in 100 children and adults impacted by CHD. ACHA funds ACHD-specific research grants and is a leading organization in advocating for research at the federal level; has accredited 40+ ACHD programs across 25 states; and offers extensive educational tools, including defect-specific resources, weekly webinars, and a searchable clinic directory. In 2021, we will host walks in 11 communities to raise money for continued research, education and outreach for the CHD community. We’re here to empower adults to take an active role in their cardiac care, to educate parents on the lifelong specialized care their young child will need in the future, and to support young adults through the transition to adult CHD care. We hope you will join us and help us further our impact by supporting ACHA’s Walk for 1 in 100. Click here for more information and to register
  24. Join us as we walk for the more than 2.5 million people living with congenital heart disease (CHD) across the country. Since 1998, the Adult Congenital Heart Association (ACHA) has been empowering and advocating for the 1 in 100 children and adults impacted by CHD. ACHA funds ACHD-specific research grants and is a leading organization in advocating for research at the federal level; has accredited 40+ ACHD programs across 25 states; and offers extensive educational tools, including defect-specific resources, weekly webinars, and a searchable clinic directory. In 2021, we will host walks in 11 communities to raise money for continued research, education and outreach for the CHD community. We’re here to empower adults to take an active role in their cardiac care, to educate parents on the lifelong specialized care their young child will need in the future, and to support young adults through the transition to adult CHD care. We hope you will join us and help us further our impact by supporting ACHA’s Walk for 1 in 100. Click here for more information and to register
  25. Join us as we walk for the more than 2.5 million people living with congenital heart disease (CHD) across the country. Since 1998, the Adult Congenital Heart Association (ACHA) has been empowering and advocating for the 1 in 100 children and adults impacted by CHD. ACHA funds ACHD-specific research grants and is a leading organization in advocating for research at the federal level; has accredited 40+ ACHD programs across 25 states; and offers extensive educational tools, including defect-specific resources, weekly webinars, and a searchable clinic directory. In 2021, we will host walks in 11 communities to raise money for continued research, education and outreach for the CHD community. We’re here to empower adults to take an active role in their cardiac care, to educate parents on the lifelong specialized care their young child will need in the future, and to support young adults through the transition to adult CHD care. We hope you will join us and help us further our impact by supporting ACHA’s Walk for 1 in 100. Click here for more information and to register
  26. Join us as we walk for the more than 2.5 million people living with congenital heart disease (CHD) across the country. Since 1998, the Adult Congenital Heart Association (ACHA) has been empowering and advocating for the 1 in 100 children and adults impacted by CHD. ACHA funds ACHD-specific research grants and is a leading organization in advocating for research at the federal level; has accredited 40+ ACHD programs across 25 states; and offers extensive educational tools, including defect-specific resources, weekly webinars, and a searchable clinic directory. In 2021, we will host walks in 11 communities to raise money for continued research, education and outreach for the CHD community. We’re here to empower adults to take an active role in their cardiac care, to educate parents on the lifelong specialized care their young child will need in the future, and to support young adults through the transition to adult CHD care. We hope you will join us and help us further our impact by supporting ACHA’s Walk for 1 in 100. Click here for more information and to register
  27. Join us as we walk for the more than 2.5 million people living with congenital heart disease (CHD) across the country. Since 1998, the Adult Congenital Heart Association (ACHA) has been empowering and advocating for the 1 in 100 children and adults impacted by CHD. ACHA funds ACHD-specific research grants and is a leading organization in advocating for research at the federal level; has accredited 40+ ACHD programs across 25 states; and offers extensive educational tools, including defect-specific resources, weekly webinars, and a searchable clinic directory. In 2021, we will host walks in 11 communities to raise money for continued research, education and outreach for the CHD community. We’re here to empower adults to take an active role in their cardiac care, to educate parents on the lifelong specialized care their young child will need in the future, and to support young adults through the transition to adult CHD care. We hope you will join us and help us further our impact by supporting ACHA’s Walk for 1 in 100. Click here for more information and to register
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