Congenital cytomegalovirus (congenital CMV) is a group of symptoms that may occur when an infant is infected with the&nbsp;&nbsp;before birth. Most infants who are infected with the virus never develop symptoms of the condition. However, approximately 10% of babies will experience health problems and/or disabilities such as problems with the lungs, liver and/or spleen at birth; hearing loss; vision loss; intellectual disability; seizures; small head size; and/or lack of coordination. Some babies with the condition may have evidence of infection at birth, while others may not develop symptoms for two or more years. Congenital CMV occurs when a mother is infected with cytomegalovirus during pregnancy and passes the infection to the fetus through the&nbsp;. Treatment is based on the signs and symptoms present in each person

Congenital Cytomegalovirus

For our very first Throwback Thursday episode we celebrate the bravery of our men and women that have served in the United States Armed Services!&nbsp;&nbsp;  In this episode we will discuss not just continuing life after a horrific injury, but excelling and living life to it's fullest, minus two arms and two legs.&nbsp; On April 10, 2012, United States Army Staff Sergeant Travis Mills of the 82nd Airborne was critically injured on his third tour of duty in Afghanistan by an IED (improvised explosive device) while on patrol, losing portions of both legs and both arms. In September 2013, Travis and his wife Kelsey founded the&nbsp;, a nonprofit organization, formed to benefit and assist post 9/11 veterans who have been injured in active duty or as a result of their service to our nation. The veteran and their families receive an all-inclusive, all-expenses paid, barrier-free vacation to Maine where they participate in adaptive activities, bond with other veteran families, and enjoy much-needed rest and relaxation in Maine’s great outdoors. If you are in a giving mood this year, the Travis Mills Foundation is a great way to give back to injured Veterans!&nbsp;  TRANSCRIPT PodcastDX-Quad_Amputee &nbsp; Lita T&nbsp; 00:10 Hello and welcome to another episode of podcast dx. The show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. I'm Lita &nbsp; Ron&nbsp; 00:22 I'm Ron, &nbsp; Jean&nbsp; 00:23 and I'm a pina colada. &nbsp; Lita T&nbsp; 00:24 You're not a pina colada she's Jean Marie. Collectively we're the hosts of PodcastDX. On today's show we're speaking with Travis Mills. Travis, if you're not familiar with him by now is the quadruple amputee from an Afghanistan IED and we're going to hear more about his story in a little bit. And he also is running a foundation that provides R&amp;R services more or less for other veterans that have been injured. Is that right Travis? &nbsp; Travis&nbsp; 00:55 Yeah, absolutely it for physically injured and now we're moving towards all injuries. &nbsp; Lita T&nbsp; 01:00 Great, great. Well, welcome to the show. Go ahead, Ron &nbsp; Ron&nbsp; 01:05 Travis. Hi, this is Ron. Again. Thank you for joining us today on our show. First, I would like to start off by saying thank you for your service to our country. &nbsp; Travis&nbsp; 01:15 Well, no, I appreciate it. Thank you so much. And I'm excited to be here. I'm looking forward to hanging out with you guys for a bit. Yeah! &nbsp; Ron&nbsp; 01:21 &nbsp;I read a bit about your injuries and your recovery. I gotta say, I am amazed by your determination and your tenacity. It seems like you've overcome a lot of challenges since April of 2012. Could you tell our listeners a little bit about that day? didn't it just start off as a regular day for you. &nbsp; Travis&nbsp; 01:41 You know, it did we were on our, you know, deployment. I was supposed to be there for nine months as my third deployment. And we had a phone call come in from the village elder that there was some IEDs we had a checkout. So we put our gear on like normal. We went on patrol and try to help them out. And we went, you know, the same routes that we always would take not the same routes, the same general direction. And I had the guy in front of me with the Minesweeper and swept the ground once again, twice like we are protocol. And it just didn't alarm that there's anything under the soil. So I happened to take my backpack off and I put it on the ground. And then the bomb went off. You know it. It shocked my world to be honest with you. &nbsp; Lita T&nbsp; 02:19 Well that's For sure. &nbsp; Jean&nbsp; 02:21 Yeah. I can't even imagine what you were going what was going through your mind at that time? Probably. Yeah, shock. What were the next steps after you were evacuated from the site where you were actually injured. For instance, how soon after the attack, were you transferred back stateside? And was there an intermediate...

Throwback Thursday!  Travis Mills Veteran/Quad Amputee

A hiatal hernia occurs when the upper part of your stomach bulges through the large muscle separating your abdomen and chest (diaphragm). Your diaphragm has a small opening (hiatus) through which your food tube (esophagus) passes before connecting to your stomach. In a hiatal hernia, the stomach pushes up through that opening and into your chest. A small hiatal hernia usually doesn't cause problems. You may never know you have one unless your doctor discovers it when checking for another condition. But a large hiatal hernia can allow food and acid to back up into your esophagus, leading to heartburn. Self-care measures or medications can usually relieve these symptoms. A very large hiatal hernia might require surgery. As discussed in earlier episodes, Lita has Ehlers Danlos and it turns out this is the cause of her fourth hernia we will talk about today. "Gastrointestinal (GI) manifestations are found in Ehlers Danlos syndrome (EDS) hypermobility subtype (HM). We aimed to assess associations between EDS HM and other EDS subtypes with GI manifestations. Methods: We reviewed medical records of EDS patients evaluated at Mayo Clinic's Medical Genetics Clinic 1994-2013. We extracted information regarding EDS subtypes, GI manifestations, and treatments. Key Results: We identified 687 patients; 378 (56%) had associated GI manifestations (female 86.8%, diagnosis mean age 29.6 years). Of the patients identified, 58.9% (43/73) had EDS classic, 57.5% (271/471) EDS HM, 47.3% (27/57) EDS vascular subtypes. In addition, 86 patients had EDS that could not be classified in any of those three subtypes. Commonest GI symptoms were: abdominal pain (56.1%), nausea (42.3%), constipation (38.6%), heartburn (37.6%), and irritable bowel syndrome-like symptoms (27.5%). Many GI symptoms were commoner in EDS HM than the other subtypes together. Among 37.8% of the 378 patients who underwent esophagogastroduodenoscopy, the commonest abnormalities were gastritis, hiatal hernia and reflux esophagitis. Abnormal gastric emptying was observed in 22.3% (17/76): 11.8% delayed and 10.5% accelerated. Colonic transit was abnormal in 28.3% (13/46): 19.6% delayed and 8.7% accelerated. Rectal evacuation disorder was confirmed in 18/30 patients who underwent anorectal manometry. Angiography showed aneurysms in abdominal vessels in EDS vascular type. Proton pump inhibitors (38%) and drugs for constipation (23%) were the most commonly used medications. A minority underwent colectomy (2.9%) or small bowel surgery (4%). Conclusions &amp; Inferences: EDS HM and other subtypes should be considered in patients with chronic functional GI symptoms and abdominal vascular lesions." (credits )

Hiatal Hernia

Our guest on today's show is &nbsp;a retired Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 10 year hereditary colon cancer WARRIOR.&nbsp;   One of the risk factors for colorectal&nbsp;&nbsp;is a&nbsp;&nbsp;of the disease. Colorectal cancer is called "hereditary" or "inherited" when several generations of a family have it. Experts have found gene changes (also known as mutations or abnormalities) that&nbsp;. A gene is a block of DNA that holds the genetic code, or instructions, for making proteins vital to our bodily functions. The children of people who carry these genes have a 50% chance of getting them from their parents. The two most common inherited colorectal cancer syndromes are hereditary nonpolyposis colorectal cancer () and&nbsp;&nbsp;(FAP). These two account for less than 5% of all colorectal cancers. Hereditary Nonpolyposis Colorectal Cancer (Lynch Syndrome) HNPCC, also known as Lynch syndrome, is the most common form of hereditary&nbsp;, accounting for about 3% of all colorectal cancer diagnoses each year. People with HNPCC often have at least three family members and two generations with colorectal cancer, and cancer develops before age 50. lthough not everyone who inherits the HNPCC gene will get colorectal cancer, the risk is very high: about 80%. People with HNPCC also have a higher risk of other Lynch syndrome-related cancers, including brain,&nbsp;kidney, ovarian, uterine, bladder, pancreatic, small intestine, and&nbsp;s. Doctors can check the pattern of colorectal cancer in relatives in order to find out if the family has HNPCC. "HNPCC families" must show certain signs of a pattern of colon cancer across generations. These are called the Amsterdam Criteria and include:  At least three members with a Lynch syndrome-related cancer At least two successive generations with this type of cancer Two family members with the disease are first-degree relatives (i.e. parents, brothers, sisters, or children) of another family member with a Lynch syndrome cancer At least one member affected at or before age 50 FAP is excluded from the family member's diagnosis  Check with your doctor if you think this applies to your family. Colonoscopies are recommended in family members who are 10 years younger than the youngest family member who was diagnosed with cancer. You should also be screened for other Lynch syndrome-related cancers. For people with a diagnosis of Lynch syndrome, screening usually starts between ages 20 and 25. Familial Adenomatous Polyposis (FAP) Syndrome Familial adenomatous polyposis (FAP) is a rare condition marked by the presence of hundreds or thousands of benign polyps, noncancerous growths in the large intestine and upper respiratory tract. It’s thought to happen in about 1% of all people diagnosed with colorectal cancer each year. The polyps start early, with 95% of people with FAP getting them by age 35, and are often found in patients in their&nbsp;, with 50% having polyps by age 15. Without&nbsp;&nbsp;removal, there is almost a 100% chance that some of the polyps will become cancer, usually by age 40.&nbsp;&nbsp;is also linked with FAP. Although most cases of FAP are inherited, nearly a third are the result of a spontaneous (newly occurring) gene change. For people who develop a new gene mutation, they might pass the FAP gene on to their children. What Is the FAP Gene? Genes are tiny segments of DNA that control how cells function, such as telling them when to divide and grow. One copy of each gene comes from your mother; the other comes from your father. In 1991, researchers identified the gene called APC that is responsible for the condition. It can be found in 82% of patients with FAP. The lifetime risk of colon cancer in people who have this gene change is close to 100%. What’s the Difference Between FAP and HNPCC? The two main differences between FAP and HNPCC are:  Number of genes involved.&nbsp;In FAP, only one gene, APC, has a mutation. In HNPCC, several gene...

Hereditary Colon Cancer

&nbsp; On this week's episode we are discussing Tuberculosis, or TB.&nbsp; Currently the infection has a rate of infection that is only 2.2 per 100,000 persons.&nbsp; TB is more common in countries where many people live in absolute poverty because people are more likely to:  live and work in poorly ventilated and overcrowded conditions, which provide ideal conditions for TB bacteria to spread suffer from malnutrition and disease – particularly HIV – which reduces resistance to TB have limited access to healthcare – and just one person with untreated infectious TB can pass the illness on to 10-15 people annually.  Other TB Facts:   A total of 1.5 million people died from TB in 2020 (including 214 000 people with HIV). Worldwide, TB is the 13th leading cause of death and the second leading infectious killer after COVID-19 (above HIV/AIDS).   In 2020, an estimated 10 million people fell ill with tuberculosis (TB) worldwide. 5.6 million men, 3.3 million women and 1.1 million children. TB is present in all countries and age groups. But TB is curable and preventable.   In 2020, 1.1 million children fell ill with TB globally. Child and adolescent TB is often overlooked by health providers and can be difficult to diagnose and treat.   In 2020, the 30 high TB burden countries accounted for 86% of new TB cases. Eight countries account for two thirds of the total, with India leading the count, followed by China, Indonesia, the Philippines, Pakistan, Nigeria, Bangladesh and South Africa.   Multidrug-resistant TB (MDR-TB) remains a public health crisis and a health security threat. Only about one in three people with drug resistant TB accessed treatment in 2020.   Globally, TB incidence is falling at about 2% per year and between 2015 and 2020 the cumulative reduction was 11%. This was over half way to the End TB Strategy milestone of 20% reduction between 2015 and 2020.   An estimated 66 million lives were saved through TB diagnosis and treatment between 2000 and 2020.   Globally, close to one in two TB-affected households face costs higher than 20% of their household income, according to latest national TB patient cost survey data. The world did not reach the milestone of 0% TB patients and their households facing catastrophic costs as a result of TB disease by 2020.   By 2022, US$ 13 billion is needed annually for TB prevention, diagnosis, treatment and care to achieve the global target agreed at the UN high level-meeting on TB in 2018.   Funding in low- and middle-income countries (LMICs) that account for 98% of reported TB cases falls far short of what is needed. Spending in 2020 amounted to US$ 5.3 billion less than half (41%) of the global target.   There was an 8.7% decline in spending between 2019 and 2020 (from US$ 5.8 billion to US$ 5.3 billion), with TB funding in 2020 back to the level of 2016.   Ending the TB epidemic by 2030 is among the health targets of the United Nations Sustainable Development Goals (SDGs).   Tuberculosis (TB) is caused by bacteria (Mycobacterium tuberculosis) that most often affect the lungs. Tuberculosis is curable and preventable. TB is spread from person to person through the air. When people with lung TB cough, sneeze or spit, they propel the TB germs into the air. A person needs to inhale only a few of these germs to become infected. About one-quarter of the world's population has a TB infection, which means people have been infected by TB bacteria but are not (yet) ill with the disease and cannot transmit it. People infected with TB bacteria have a 5–10% lifetime risk of falling ill with TB. Those with compromised immune systems, such as people living with HIV, malnutrition or diabetes, or people who use tobacco, have a higher risk of falling ill. When a person develops active TB disease, the symptoms (such as cough, fever, night sweats, or weight loss) may be mild for many months. This can lead to delays in seeking care, and results in transmission of the bacteria to others. People...

Tuberculosis/ TB

&nbsp;Factitious Disorder Imposed on Another (FDIA), also known as Munchausen Syndrome by Proxy (MSbP) is a very serious form of child abuse. The perpetrator, usually the mother, invents symptoms or causes real ones in order to make her child appear sick. Our guest today, Craig Lewis, not only survived the ordeal but has written a book on his experiences and is a Peer Counselor to help others.&nbsp; ​ Craig recently published his book Craig continues to rise ever higher on his mission to be the living proof to all, that surviving the impossible, is entirely possible. ​ Knowing that FDIA Munchausen's can scar a person and possibly keep a person from receiving health care that IS needed, I thought it best to do a quick "check in" with Craig to see how he is doing with COVID and everything that goes along with it! &nbsp; ​ &nbsp;

Munchausen's During COVID

This week marks four years as co-hosts on PodcastDX.&nbsp; For today's show we will be recalling some of our most memorable interviews from these past four years.&nbsp; We have had the honor of speaking with 151 guests and have posted 209 episodes so it wasn't an easy task but with input from everyone on the team, I think we had success! &nbsp; ​ I want to take the time to thank our listeners from around the world. &nbsp; THANK YOU!! There isn't a day that goes by that I am not amazed that we have come so far!&nbsp; Over 54 countries and a quarter of a million listeners are wondering what will the next year bring! You'll have to check our  page to find out more, but for today, I really hope you enjoy our show!

Four Year Recap

On this episode we have the honor of speaking with Robyn A. Maguire.&nbsp; She is a mother to 3 wonderful children. Her oldest is learning how to drive and excelling in her academics as a freshman in high school. Her middle child’s super into sports and music. Right now he’s teaching himself how to play the guitar. Her youngest son Zeke, smiles like sunshine, he warms the room. Funny, because his condition, Shapiro’s syndrome gives him hypothermia. Along with the joy of being their mom, Robyn is a bartender, student, enjoys yoga, and is a music enthusiast. She loves to see live music and Zeke’s dad shares the same passion.&nbsp; She is sharing Zeke's story so others with this condition will not feel so alone. ​ Shapiro syndrome is an extremely rare disorder consisting of&nbsp;&nbsp;&nbsp;(due to&nbsp;&nbsp;dysfunction of&nbsp;),&nbsp;&nbsp;(sweating), and&nbsp;&nbsp;with onset typically on adulthood. The disease affects about 50 people worldwide. The duration and frequency of the episodes vary from person to person, with some episodes lasting hours to weeks and occurring from hours to years. Very little is known about the disease due to the small number of people affected.

Shapiro's Syndrome

On today's show we are speaking with Christina Coates about Hypertrophic olivary degeneration (HOD) a rare neurological condition caused by degeneration in the brain stem, the structure that connects the brain to the spinal cord.&nbsp; Signs and symptoms include palatal tremors, lack of movement coordination (ataxia), Holmes tremor, vision problems, muscle weakness, and gait impairment, along with an MRI showing enlargement (hypertrophy) of the .   In 2017, Christina was diagnosed with a small Cavernous Malformation with a previous hemorrhage in her cerebellum. In 2021, she had a craniotomy to remove the malformation, and developed HOD on her medulla. Her symptoms began a few months after the Cavernoma resection. Creating A is a passion project for Christina, with the hope of replicating the success of The Angioma Alliance. Christina has worked in Accounting and Finance for her entire career and enjoys her volunteer work with the Arizona chapter of the Angioma Alliance. Christina relishes the opportunities she has to attend and support the Arizona Cardinals, reading, and outdoors activities as her symptoms permit.&nbsp;

Hypertrophic Olivary Degeneration

This week we're talking about FCCM or, Familial cerebral cavernous malformation, with Megan.&nbsp; &nbsp;[FCCM is] ..." a rare, capillary-venous malformations characterized by closely clustered irregular dilated capillaries that can be asymptomatic or that can cause variable neurological manifestations such as seizures, non-specific headaches, progressive or transient focal neurologic deficits, and/or cerebral hemorrhages".  Megan is a mom to twins — identical 17-year-old girls — and a 13-year-old son. She, her husband, and kids live just outside of Phoenix. She is a writer, caregiver, and mom. Maybe most importantly, Megan is also an advocate for rare diseases and rare disease parenting.  She is currently the chair to the Arizona Angioma Community Alliance in her “free” time. Follow her on &nbsp;,&nbsp; , or  or her brand new website

Familial cerebral cavernous malformation

This week we are talking about organoids. &nbsp;Scientists have shown over the past decade or so that organoids—small, organ-like structures grown in culture from stem cells—can integrate into many organs, including the&nbsp;,&nbsp;, and&nbsp;&nbsp;of mice, and repair defects. In a study published today (February 18) in&nbsp;, researchers have advanced this approach in human tissue, and demonstrate that organoids derived from adult cholangiocytes, the cells that line the bile ducts, can integrate into human livers from deceased organ donors. The findings pave the way for new treatments for liver diseases, as well as for the repair of donated organs to make more available for transplant. (credits: https://bit.ly/3LBnyqw)  &nbsp;

Bile Duct Organoids

This week we are talking once again with Anna, this time about Crohn's Disease and Gastroparesis.&nbsp; Anna is a 35 year old female who has an independent spirit inside of a body that holds an alphabet of health conditions. Anna worked as a case manager for individuals with intellectual and developmental disabilities where she loved to advocate for her clients. When her health forced her to take a step back from working things have been rough as she looks for a new way to advocate for herself and for others. She has struggled with different health issues most of her life but the battle that lead to her to become disabled started in July of 2018. Currently she has been diagnosed with Ehlers Danlos Syndrome, Gastroparesis, POTS, MS, Addisons, Crohn's, Hypoglycemia, MCAS, TPN dependent, Failure to thrive and more.&nbsp;  Crohn's disease is a type of inflammatory bowel disease (IBD). It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. Inflammation caused by Crohn's disease can involve different areas of the digestive tract in different people. This inflammation often spreads into the deeper layers of the bowel. Crohn's disease can be both painful and debilitating, and sometimes may lead to life-threatening complications. While there's no known cure for Crohn's disease, therapies can greatly reduce its signs and symptoms and even bring about long-term remission and healing of inflammation. With treatment, many people with Crohn's disease are able to function well  Gastroparesis is a chronic disorder which means delayed stomach emptying without a blockage. In healthy people, when the stomach is functioning normally, contractions of the stomach help to crush ingested food and then propel the pulverized food into the small intestine where further digestion and absorption of nutrients occurs.  &nbsp;

Crohn's and Gastroparesis With Anna

Medicines are used to treat diseases, manage conditions, and relieve symptoms. Medicines are generally safe when used as prescribed or as directed on the label, but there are risks in taking any medicine. Each year in the United States, adverse drug events – harm resulting from medication use – cause more than one million visits to hospital emergency departments. Learning about medication safety can reduce and even prevent the risk of harm for you and your loved ones.

Prescription Medicine Safety

Genevieve Scaro is a retired Defense Contractor, mother, grandmother and great grandmother.&nbsp; She lives in the western suburbs of Chicago and is fairly healthy for her 85 years but one problem she deals with is glaucoma. &nbsp; She is an artist who likes to draw and paint in water color.&nbsp; She is an avid traveler, and volunteers regularly for church, hospitals and local food banks&nbsp;

Glaucoma

Episode 6 features Mary W. &nbsp; A prolific dancer for most of her adult life, she stayed in remarkable condition. Mary is an octogenarian from Chicago, Illinois.&nbsp; She is a retiree with many nieces and nephews.&nbsp; Her hobbies include crocheting and baking.&nbsp; She also loves cards, scrabble and crossword puzzles. &nbsp;

Sciatica & Arthritis PodcastDX

Episode 7 features a forum discussion on the 3 major types of arthritis.&nbsp; Osteoarthritis (OA), Rheumatoid Arthritis (RA) and Psoriatic Arthritis .&nbsp; As a follow up to last weeks episode on Sciatica and how osteoarthritis can be a contributing factor, we felt this would a good time to delve into more detail on the various types of arthritis.&nbsp; &nbsp;

Athritis

Rayna Marie is a college student ready to start teaching next fall.&nbsp; She shared her story with us on the parasite that took up residence in her eye!&nbsp; Go to our Facebook page to listen now! Facebook.com/PodcastDX

Toxoplasmosis

Episode 11 features Tatum, an up and coming vocal artist and musical theater star from the Chicago suburbs.&nbsp; Tatum has stared in over 2 dozen performances in her life and was at risk of losing it all when she developed nodules on her vocal cords during High School.&nbsp; Listen to this episode to hear how she overcame this obstacle and if we are lucky we will be seeing her on the big screen in a few short years!

Episode 11 Nodules on the Vocal Cords

In this episode we are first having a forum discussion covering the terms used in medical cannabis.&nbsp; The PodcastDX co-hosts will talk briefly about the terminology to familiarize you with some of the terms.&nbsp; Then we will move directly into an interview with a patient who has recently been prescribed medical cannabis to treat several medical conditions.&nbsp; Rather than discussing the effects of the product on her symptoms we are getting some background into how a new patient goes about applying for and finally obtaining the product for use.&nbsp; This is not as simple as your doctor sending a prescription over to the local pharmacy as you will see. &nbsp; In future episodes we will discuss the perspective of medical cannabis from a sports doctor and a local budtender at a dispensary.&nbsp; Welcome to a new world of medicine with an herb that has been used medicinally for thousands of years

Medical Cannabis Part 1

Ron is a co-host of PodcastDX, he was injured as a child when he was struck by an automobile.&nbsp; He survived the critical injuries but a permanent deficit of his brachial plexus nerve bundle remained.&nbsp; Although he does not have the use of his right arm, he continues to take on challenge after challenge.&nbsp; His latest goal is to compete in the 2020 Paralympics!&nbsp; We certainly support his drive to excel, and hope to see him on the podium for that event accepting his first medal!

Brachial Plexus Injury and Living With a Disability

On this episode of PodcastDx we get the dope on medical cannabis from Budtender Alex. A Budtender can help guide customers through the hazy world of medical marijuana.&nbsp; Feel free to ask them any questions you have, alot extra time for your first visit so you can get the "420" on product lines, methods of delivery and strain specifics. This cash only business is not yet covered by insurance at dispensaries.

Medical Cannabis / Budtender Interview

On this episode of PodcastDX we get a physician's perspective on medical cannabis.&nbsp; This is part three of our medical cannabis series.&nbsp; Our guest, Dr. Robert Weil, D.P.M. specializes in orthotics, sports medicine, and podiatric medicine.&nbsp; He also hosts a radio show and co-authored the book #Hey Sports Parents.&nbsp;&nbsp;

Medical Cannabis Part 3

In this episode we had the pleasure of speaking with Bob.&nbsp; Bob lives in Wisconsin, with his lovely lady Sue, and their Huskies: Sasha and Tanner.&nbsp; Bob has recently had a cholecystectomy (or in layman terms, he had his gallbladder removed).&nbsp;&nbsp;

Gallbladder

&nbsp;On this episode we discuss arthroscopic knee surgery with Becky.&nbsp; Becky has a connective tissue disease and has had this procedure several times. &nbsp;

Arthroscopic Knee Surgery

In this episode we will discuss Non-Hodgkins Lymphoma&nbsp;with Sandra&nbsp;from the U.K.&nbsp; Besides dealing with this disease, Sandra started a charity to fund equipment for cancer research.&nbsp; Cure-Cancer@UCL&nbsp;is a non profit charity raising funds that provide medical equipment to the research team at University College London.

Non Hodgkins Lymphoma

Cerebellar slumping (aka cerebellar ptosis) occurs as a result of too much bone being removed around the foramen magnum that there is no longer enough bone to support the weight of the cerebellum. Today we speak again with Heidi concerning her Brain Slump diagnosis.&nbsp; &nbsp;

Cerebellar Slumping

In this episode we discuss Mast cell activation disorder (MCAD) with Tara Notrica from New York.&nbsp; MCAD is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks.

Mast Cell Activation Disorder

Although there is no single cause to suicide, suicide is a major public health concern. Over 47,000 people died by suicide in the United States in 2017; it is the  overall. Suicide is complicated and tragic, but it is often preventable. Knowing the warning signs for suicide and how to get help can help save lives.&nbsp;It most often occurs when stressors exceed current coping abilities of someone suffering from a mental health&nbsp;condition.&nbsp; Our guest today is a suicide survivor and speaks openly about this difficult topic. &nbsp;

Suicide Awareness

This week we are discussing endometriosis.&nbsp; Endometriosis is&nbsp;an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs.  Returning to our show to discuss endo is our guest Asiya&nbsp;Rafiq.&nbsp; She joined us last week to talk about adaptive clothing. &nbsp; &nbsp;

Endometriosis

Moira Cleary (more-a), a mom of two beautiful, smart, funny teenagers who both live with often debilitating chronic conditions, is a Certified and Accredited Professional Coach as well as a Mindfulness Practitioner, she is sharing her knowledge and experience with Moms struggling, as they parent children with challenging, complex or even extra-ordinary needs. She is on a mission to help mothers find their strength so that they can show up for themselves and their families the way they want to, not just with the left overs. Her focus is simple, you matter as much as your family.&nbsp; She and her daughter deal with Celiac Disease on a daily basis and is here to share her story.  Celiac disease is a digestive disorder that causes problems in your small&nbsp;intestine. You experience the problems&nbsp;when you eat foods that have gluten. Gluten is a&nbsp;protein&nbsp;found in the grains wheat, rye, and barley. In people who have celiac disease, gluten causes the&nbsp;immune&nbsp;system to attack the small intestine. This damages the small intestine. When this happens, your body doesn’t absorb or get the important nutrients it needs. These include vitamins, calcium, protein,&nbsp;carbohydrates, and fats. Your body can’t work well without these nutrients.

Celiac Disease

Myisha is the ceo of @gameofcrohnsandchronicillness Facebook group and Instagram.&nbsp; Myisha is a 2019 WEGO&nbsp;Health Awards finalist and WEGO&nbsp;Health top 10 rookie of the year 2020 this year. ​ Myisha have been nominated for 10 WEGO&nbsp;Health awards. Myisha started her Facebook group gameofcrohnsandchronicillness to help others feel less alone. ​ When Myisha was first diagnosed 11 years ago she knew absolutely nothing about her chronic illness or what she would be dealing with for the rest of her life.&nbsp; Myisha is a passionate dedicated advocate she’s received proclamations from states for recognition of her advocacy and IBD awareness&nbsp;

Crohns During Motherhood

Matt is a preschool teacher turned computer programmer and disability advocate.&nbsp; He developed Epilepsy while in college and is here today to discuss this often misunderstood disease.&nbsp;&nbsp; ​ Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness. ​Anyone can develop epilepsy. Epilepsy affects both males and females of all races, ethnic backgrounds and ages. Seizure symptoms can vary widely. Some people with epilepsy simply stare blankly for a few seconds during a seizure, while others repeatedly twitch their arms or legs. Having a single seizure doesn't mean you have epilepsy. At least two unprovoked seizures are generally required for an epilepsy diagnosis. ​Treatment with medications or sometimes surgery can control seizures for the majority of people with epilepsy. Some people require lifelong treatment to control seizures, but for others, the seizures eventually go away. Some children with epilepsy may outgrow the condition with age.

Epilepsy

Kim Shields is 38 years old and just finished her masters in social work program. She was diagnosed with FOP at age 15, but it has mildly affected her throughout her life. She is a wheelchair user, but she doesn’t let that slow her down. She is working on a plan to open a nonprofit in the future to help with access issues for those with disabilities, specifically wheelchair access, but will fight to help anyone with a disability get access to housing, employment, and transportation that meets their individual needs to be as independent as possible. ​&nbsp; __________________________________________________________________ Fibrodysplasia ossificans progressiva (FOP) is a very rare inherited connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present (heterotopic ossification), such as the ligaments, tendons, and skeletal muscles. Specifically, this disorder causes the body's skeletal muscles and soft connective tissues to undergo a metamorphosis, essentially a transformation into bone, progressively locking joints in place and making movement difficult or impossible. Patients with FOP have malformed big toes that are present at birth (congenital). Other skeletal malformations may occur. The abnormal episodic development of bone at multiple soft tissue sites frequently leads to stiffness in affected areas, limited movement, and eventual ankylosis (fusion) of affected joints (neck, back, shoulders, elbows, hips knees, wrists, ankles, jaw - often in that order). ​Episodic flare-ups (inflammatory soft tissue swellings) of FOP usually begin during early childhood and progress throughout life. Most cases of FOP occur as the result of a sporadic new mutation and the genetic mutation that results in this disorder has been identified. FOP is caused by the mutation of a gene (ACVR1) in the bone morphogenetic protein (BMP) pathway, which is important during the formation of the skeleton in the embryo and the repair of the skeleton following birth.

Fibrodysplasia Ossificans Progressiva

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