Τα καλύτερα Undiagnosed Disease podcast (2024)

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Long Chain Hydrocxy Coenzyme A Dehydrogenase Deficiency (LCHAD) 39:08

4h ago39:08

39:08

Send us a Text Message. This week Rare Connection goes back to it's roots with a condition covered by the Medical Nutrition Equity Act if it were to pass. The MNEA would mandate that health insurance cover medically prescribed food, formula and vitamins for those who need them. At the beginning of last season in February Nutrition Equity became Rar…

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Hormone Q&A - Hormone Testing, Progesterone, and Breastfeeding While TTC 35:23

1d ago35:23

35:23

Dr. Natalie Crawford answers voicemail questions about hormones. Questions answered: Should FSH, LH, and progesterone be tested during a fertility evaluation? I have hypo hypo. Why is my period starting 12 days after my trigger shot, even though she is taking progesterone supplements? Is this normal or a concern? Is breastfeeding once a day enough …

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Navigating Chronic Pelvic Pain: Insights and Advocacy for Women's Health | Georgie Kovacs | Georgie Kovacs 18:26

5d ago18:26

18:26

Find out why Fempower Health is zeroing in on chronic pelvic pain and what it means for women's health advocacy. Episode Summary: In this episode of Fempower Health, host Georgie Kovacs delves into the complexities of chronic pelvic pain, a condition that affects countless women yet remains widely misunderstood. Chronic pelvic pain can stem from va…

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Episode 482 - Claire Champion, MSN, APRN, CPNP 6:39

7d ago6:39

6:39

Claire Champion is a nurse practitioner at Texas Children's Hospital, specializing in pulmonary hypertension. As a nurse practitioner, she has the opportunity to see some of the patients as outpatients, which allows her to witness positive outcomes and the resilience of children. She also highlights the need for nurses to have a support system to c…

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Perimenopause, Low Ovarian Reserve, and Hormones 39:55

8d ago39:55

39:55

Dr. Natalie Crawford dives deep into ovarian failure, perimenopause, and hormones. She explores how ovarian function can cease at any age, even before puberty, and discusses the natural decline in ovarian reserve as women age. She highlights the significance of estrogen, its role in overall health, and how its decline impacts women during menopause…

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Hypohidrotic Ectodermal Dysplasia With Rebekah From Oregon 29:46

11d ago29:46

29:46

Send us a Text Message. Join me as I talk with Rebekah about her child Mason's diagnosis with HypoHidrotic Ectodermal Dysplasia. Mason is now years old and he is already advocating for his health with his mother's help. HypoHidrotic Ectodermal Dysplasia is a rare genetic condition characterized by the bodies inability to sweat, sparse hare, tooth l…

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The Consent Conversation: How to Define, Model, and Live It | Adie Delaney 45:39

13d ago45:39

45:39

Originally Published May 30, 2023 The World Health Organization estimates that 1 in 3 women experiences some form of physical or sexual harassment in their lifetime. With the growing social awareness around things like women’s rights, female empowerment, and rape culture, is the problem getting worse or better? Consent is a huge topic of discussion…

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Episode 481 - Charles Burger, MD 9:26

14d ago9:26

9:26

In this episode, Dr. Charles Burger, the medical director of the Pulmonary Vascular Center at Mayo Clinic in Jacksonville, Florida, discusses the importance of patient registries, specifically the Pulmonary Hypertension Association’s PHA Registry (PHAR) for pulmonary hypertension. This registry collects clinical information and surveys from patient…

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Unexplained vs. Undiagnosed Infertility 40:11

15d ago40:11

40:11

Dr. Natalie Crawford discusses the topic of unexplained versus undiagnosed infertility. Unexplained infertility is an official diagnosis when the standard fertility tests do not reveal a clear cause for the infertility. Many cases of "unexplained" infertility may actually be due to underlying issues like low ovarian reserve, endometriosis, autoimmu…

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Exciting Update: A Time for Change and the Reason Why 30:09

20d ago30:09

30:09

Summary We are excited to announce that Fempower Health is taking a huge step forward this coming season with a major rebrand, a new podcast structure, and a few very special adaptations to the amazing community here. Introducing: Fempower Health: Chronic Pelvic Pain Hub Fempower Health: Perimenopause & Menopause Hub Again and again, I’ve seen a st…

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Episode 480 - Dr. Dunbar Ivy

21d ago

—

In this episode, Dr. Dunbar Ivy, a pediatric cardiologist, discusses the value of repeat heart catheterization in patients with pulmonary hypertension. He highlights a recent study that compared the findings of the first and second heart catheterizations. The study showed that while the first heart catheterization is important for diagnosis and cho…

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Endometriosis Q&A - Fertility, Surgery, Medication, and IVF 37:40

22d ago37:40

37:40

Dr. Natalie Crawford answers voicemail questions about endometriosis. Questions Answered: TTC soon for second child and have endo. I recently got off BC and my periods are irregular. Should I see my doctor now? Can endometriosis outside of the uterine tract still impact fertility? My doctor gave me the option between surgery and trying a new medica…

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Menkes Disease With Daniel DeFabio From New York 1:00:12

24d ago1:00:12

1:00:12

Send us a Text Message. Nicknamed Kinky Hair Syndrome Menkes Syndrome is tested for in cases where the child isn't getting enough copper which can cause hair loss. It is often the first sign. It isn't on the newborn screening currently, but their are clinical trials for it. Go to clinicaltrials.gov for more information if your child has it. Babies …

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Ovaries, the Brain, and Aging: A Longevity Connection | Dr. Jennifer Garrison 44:10

27d ago44:10

44:10

Originally Released October 24, 2023 The ovaries play a key role in overall health, not just reproduction. More scientific findings are revealing that the ovaries even influence mood, behavior, and longevity. In this episode, Dr. Jennifer Garrison from the Buck Institute for Research on Aging explains the intricate relationship between the brain an…

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Episode 479 - Claire Parker, MS, PNP, AC 11:47

28d ago11:47

11:47

In this episode, Claire Parker, a pediatric nurse practitioner, discusses the results of a study that examined the prevalence of anxiety and depression among adolescents with pediatric pulmonary hypertension. The project aimed to incorporate mental health screening into the standard care for PH patients, similar to what is done for cystic fibrosis …

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Natural Fertility Q&A: Luteal Phase, Spotting, Fecundability, and Ovulation 38:41

29d ago38:41

38:41

Dr. Natalie Crawford answers voicemail questions about natural fertility and TTC. Questions Answered: Can having retained tissue for a few months cause endometrial lining changes that could impact implantation? Could I have asherman’s? What should your lining be throughout the cycle? Can a luteal phase defect lead to a chemical pregnancy? I spot fo…

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Redefining Motherhood: Perspectives from Women without Kids | Ruby Warrington 47:33

1M ago47:33

47:33

Originally published March 28, 2023 In this honest and moving episode, author Ruby Warrington joins Fempower Health to discuss her new book, Women Without Kids. We cover all topics from childless couples who don’t want children to women who can’t have children even though it’s their deepest desire. Ruby shares her experiences writing such an import…

1
Pura Syndrome With Melissa From Washington 38:41

1M ago38:41

38:41

Send us a Text Message. In this episode I talk with Melissa from the Pura Syndrome Foundation about her child Taylor now 27 who was diagnosed with Pura Syndrome 2 years after it was discovered in 2014. Listen along and learn about this condition and Melkisa's roles with the Pura Syndromde Foundation over the years from working on the grants committ…

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Episode 478 - Tina Proulx 16:28

1M ago16:28

16:28

Tina Proulx was diagnosed with pulmonary hypertension at the age of 19. She experienced difficulty breathing and chest pain, leading to a diagnosis of chronic thromboembolic pulmonary hypertension (CTEPH), a condition caused by blood clots in the lungs. Tina eventually underwent transplant and celebrated eight years post-transplant, surpassing the …

1
Embryo Transfer Protocols 42:47

1M ago42:47

42:47

Dr. Natalie Crawford discusses the various protocols and considerations surrounding embryo transfers in IVF treatment. She explains the key differences between fresh and frozen embryo transfers, the types of protocols, add ons, and what you should ask your doctor. Taking an active role in your fertility journey and asking questions and pushing for …

1
Severe Methylene Tetrahydro Folate Reductase (MTHFR) With Grace from Florida 57:19

1M ago57:19

57:19

Send us a Text Message. In this episode I talk with Grace a parent of 2 children. Her youngest daughter Carson, who just turned 4 has Severe MTHFR. MTHFR is the rarest form of Homocystinuria. With Severe MTHFR they do NOT follow a low protein diet like classical HCU. In addition to being a parent with this rare condition, Grace also is a director o…

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LISTEN AGAIN: Could Your Undiagnosed Symptoms be a Thyroid Condition? | Denise Roguz 32:47

1M ago32:47

32:47

Originally published January 25, 2021 Whether you know you have a thyroid condition or have symptoms you can't seem to find the right answers to resolve them, this episode is for you. Denise Roguz is the co-founder, owner, and operator of ThyroidChange. It is a collaborative network, health information website, and social media campaign. It unites …

1
Episode 477 - Marilyn Hanft 9:51

1M ago9:51

9:51

Marilyn Hanft, a CTEPH patient, shares her experience with the condition. In 2011, she initially mistook her symptoms for asthma but later discovered she had clots in her lungs. Despite her health challenges, she remains determined to live life to the fullest. Hanft discusses her love for sailing and her current plan for writing a book about her sa…

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Fertility Q&A - AMH, Luteal Phase, Tubal Disease, and IVF Cycles 35:17

1M ago35:17

35:17

Dr. Natalie Crawford answers your fertility questions sent to the voicemail. Questions Answered: I am having trouble TTC for my second child after a laparoscopic appendectomy and a mass removed from my peritoneum. Should I be concerned about any structural damage? Does my AMH alone explain my two miscarriages and short luteal phase? What is my like…

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High Functioning Autism (Aspburger's Syndrome) With Kadin From Ohio 17:26

1M ago17:26

17:26

Send us a Text Message. Listen along as I talk with Kadin about High Functioning Autism. Listen to Kadin's diagnosis journey. Find out about the signs and symptoms in both children and adults, How Kadin is getting along in college, and is aspirations for the future. I am trying to turn this podcast into a Nonprofit, and I need board members if you …

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Debunking PCOS Misconceptions | Dr. Jerilynn Prior 44:50

2M ago44:50

44:50

Originally Released April 5, 2022 PCOS impacts 1 in 10 women yet it is still underdiagnosed and misdiagnosed. Dr. Jerilynn Prior, of the Centre for Menstrual Cycle and Ovulation Research (CeMCOR), is a Professor of Endocrinology and Metabolism at the University of British Columbia, with 40 years experience in women’s health. She brings an interesti…

1
Episode 476 - Scott Fleetwood 12:41

2M ago12:41

12:41

Scott Fleetwood, a former pulmonary hypertension patient from Buffalo, New York, shares his journey with rare diseases. He initially experienced shortness of breath while playing hockey and was later diagnosed with pulmonary hypertension and scleroderma. Scott received a double lung transplant in 2017. He discusses the initial fear he felt upon lea…

1
Should You Test Your Fertility? 38:14

2M ago38:14

38:14

Dr. Natalie Crawford discusses testing your fertility and if and when it's something that you should do. She explains the different types of fertility testing including testing of ovarian reserve like AMH levels, anatomy like HSG tests of the fallopian tubes and uterus, and semen analysis for male partners. She also discusses how fertility and chan…

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Cracking the Code of Vaginal Health: An Expert's Take on the Microbiome | Dr. Caroline Mitchell 45:13

2M ago45:13

45:13

Originally published March 12, 2024 Learn how your vaginal flora and gut microbiome contribute to your reproductive health. Dr. Caroline Mitchell shares her expertise and research on this important but overlooked topic. Episode Summary In this episode, we take an in-depth look at the delicate balance of the vaginal microbiome. Dr. Caroline Mitchell…

1
Episode 475 - Robert Frantz, MD 7:41

2M ago7:41

7:41

In this episode, Dr. Robert Frantz, a cardiologist at the Mayo Clinic, discusses current and upcoming clinical research in pulmonary arterial hypertension (PAH). He emphasizes the low participation rate of PAH patients in clinical trials and encourages patients to consider participating, as it not only benefits themselves but also helps advance med…

1
Top Tips For TTC 40:01

2M ago40:01

40:01

Dr. Natalie Crawford discusses her top tips for trying to get pregnant including coming off birth control, cycle tracking, and lifestyle optimization. As a society, we have normalized the idea of spending most of our reproductive years preventing pregnancy. Then suddenly you make the decision to start trying to get pregnant. There is often not a ga…

1
Hormonal Birth Control and Brain Health: A Discussion | Sarah E. Hill, PhD 1:00:29

2M ago1:00:29

1:00:29

Originally published October 3, 2023 Dr. Sarah E. Hill, PhD is a research psychologist and expert in the effects of birth control on women’s lives. She is the author of the book, "This is Your Brain on Birth Control" and has dedicated her research to uncovering the science behind hormonal birth control and its potential impacts. In this episode, Dr…

1
Episode 474 - Amy Gietzen 11:51

2M ago11:51

11:51

Amy Gietzen, a patient diagnosed with systemic scleroderma, shares her journey and experiences living with the disease. She discusses her initial symptoms, the shock of the diagnosis, and the lack of information and resources available at the time. Despite facing numerous challenges, including pulmonary fibrosis and pulmonary arterial hypertension,…

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PCOS Q&A - Hormones, Irregular Cycles, and Diagnosis 36:58

2M ago36:58

36:58

Dr. Natalie Crawford answers your voicemails about PCOS. Questions Answered: How did I get PCOS in the first place? What is the likelihood that my daughters will also have it? What are some of the early symptoms I can look for? I am not quite ready to get pregnant but I am ready to start thinking about it. I was diagnosed with PCOS and my periods a…

1
Rare Connection Episode 11: Acoustic Neuroma with Shari from California 46:52

2M ago46:52

46:52

Send us a Text Message. Shari was diagnosed with an acoustic neuroma (a rare benign tumor) In the removal of this tumor she had a stroke. In her book "When Life Gives You Lemons, Make Cranberry Juice" She talks about the removal of this tumor and how it will forever impact her life. Shari sees the Good things in life as the sweet "Cranberries" and …

1
Metabolism Health and Menopause | Dr. Lara Briden 45:16

2M ago45:16

45:16

How are metabolism, health, and menopause linked? Listen as Dr. Lara Briden shares insights from her new book, Metabolism Repair for Women. Episode Summary In this episode, we hear from Dr. Lara Briden, naturopathic doctor and celebrated author of “Period Repair Manual.” Dr. Briden joins Fempower Heath to discuss metabolic health in light of her ne…

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Episode 473 - Alvin Rocha MSN RN CPN PHN 10:18

2M ago10:18

10:18

Alvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children's Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending …

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When Is It Time To Do IVF? 35:02

2M ago35:02

35:02

Dr. Natalie Crawford discusses why and when it may be time to do IVF. IVF allows us to profoundly change your body and it’s environment. It’s important to remember that the two things that predict IVF success are your ovarian reserve or number of eggs and your age. So timing plays a key role in this decision and it also comes down to why you are in…

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Rare Connection Episode 10: AI Assist 30:31

2M ago30:31

30:31

Send us a Text Message. Meet Joel Cofounder of Endurant Health. Endurant Health has developed an AI tool to help diagnose rare disease patients. Joel's mother was diagnosed with a rare genetic metabolic condition called Homocystinuria. (HCU). Together with friends who are undergoing similar battles finding proper diagnosis they founded Endurant Hea…

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