Patricia Weltin of Beyond the Diagnosis talks about Elhers-Danlos syndrome, a rare disease that afflicts two of her daughters.

Ehlers-Danlos syndrome is a group of connective tissue disorders. There are various forms of Ehlers-Danlos. According to the NIH, there are numerous types of Ehlers-Danlos syndrome had been described and to date, over 19 genes have been associated with this disease. Most of those genes (COL1A1, COL1A2, COL3A1, COL5A1, COL5A2, ADAMTS2, FKBP14, PLOD1, and TNXB) are linked directly or indirectly to collagen production.

A common symptom in most people with Ehlers-Danlos syndrome is an unusually large range of joint movement (hypermobility). While often viewed as an interesting school yard trick, the loose joints are unstable and prone to dislocation and chronic pain.

Many people with the Ehlers-Danlos syndrome also have soft, velvety skin that is elastic and fragile. Organ damage and bone abnormalities can also be observed in these patients.

As Weltin explains in this video, her daughters grew up relatively normal but as soon as puberty began, aches, pains, and joint dislocations became more commonplace.

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Dr. Anand Saggar describes the complexity of Ehlers-Danlos syndrome. Likening it to the mythological creature of the hydra, Dr. Saggar cautions that EDS has “many heads”, and it can affect individuals in vastly different ways.

Dr. Saggar goes on to explain just how common connective tissue disorders can be in patients with other disorders and even in the general population. He emphasizes the importance of genetic testing to confirm diagnoses of connective tissue disorders.

This lecture was presented at the 2019 London Roundtable provided in partnership with the Ehlers-Danlos Society, focusing on issues surrounding dysautonomia, connective tissue disorders, Chiari malformation and related syndromes. (2019)

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What is Ehlers-Danlos syndrome? Ehlers-Danlos syndrome is a group of related genetic conditions which are all caused by defective collagen synthesis. Normally, collagen provides strength and elasticity to our bodies, and it’s found in the skin, ligaments, tendons, and bones. In Ehlers-Danlos syndrome, defective collagen leads to stretchy skin, easy bruising, and joints that are super flexible.

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Ehlers-Danlos syndrome or EDS is a group of diseases with rare types I treat using a holistic approach. There is a more common type called hEDS, or hypermobility type that often goes undiagnosed for years but can explain lots of ‘weird’ symptoms from fatigue and brain fog to pain, in addition to being more flexible in some joints. But importantly, as we get older, even people with hEDS can get stiff, and this means they sometimes get missed and diagnosed instead with other things like chronic fatigue, fibro, or depression without a known cause. Often when I tell someone they have EDS and that it can explain a lot of their health issues, it’s a huge relief and can also help target treatments better, from cannabinoids to functional restoration programs and mitochondrial energy support.

#rarediseaseday #ehlersdanlossyndromes #EDS #ukmedicine #burnoutrecovery #cannabinoids #fibromyalgia #chronicfatigue #mentalhealth #mentalwellbeing #qualityoflifematters #naturalmedicine #botanicalmedicine #londonwellness #wellnesslondon #integrativemedicine #holisticdoctor #holisticmedicine #functionaldoctor #chronicpainawareness #womenshealth #mentalwellbeing #cannabinoidmedicine #resiliencemedicine
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This video is part of a series about a rare condition called Ehlers-Danlos syndrome, and how working as a multidisciplinary team can improve patient outcomes. The videos include interviews with a consumer, Tracey, and members of the multidisciplinary team that help to manage her condition. In this video, Dr Fraser Burling speaks about his experience working as a dual physician and rheumatologist in a multidisciplinary team to improve health outcomes for patients, including Tracey.

An international expert opinion was received on the treatment described in these videos. Download a copy of the opinion, written by Dr David Rabago from Penn State College of Medicine: https://www.hqsc.govt.nz/assets/Consumer-hub/Partners-in-Care/Publications-resources/Prolotherapy-review-letter-Dr-Rabago.pdf
—

This series of videos describe the experience and treatment of one consumer with Ehlers-Danlos Syndrome (EDS). Three members of the multidisciplinary team (MDT) involved in the care and treatment of this person are interviewed.

We acknowledge that a MDT can be much larger than this and the video does refer to the wider MDT as an important aspect of diagnosis, treatment and care of people with EDS.

Owing to the diverse and complex presentation of EDS, Rare Disorders NZ (formerly NZORD) has produced guidance (funded by the Ministry of Health) that will help health care professionals and providers to assess, diagnose and plan care for people with EDS.

Such guidance will hopefully promote discussion amongst health providers treating EDS, resulting in improved care and outcomes for consumers.

ACC sourced expert opinion about the evidence-base of prolotherapy being provided by Dr Burling. This expert opinion stated, “Clearly there is support for this in the literature.”

https://www.hqsc.govt.nz/assets/Consumer-Engagement/Resources/Prolotherapy-review-letter-Dr-Rabago.pdf

At an ACC review hearing, the reviewer considered this treatment had been excluded from the ACC prolotherapy assessment and that it was “a generally accepted means of treatment within New Zealand.” As such, ACC paid the cost of prolotherapy for the consumer during the entire rehabilitation programme. The prolotherapy treatment described by Tracey has had positive results for her.

There is mention throughout the videos of the prevalence of EDS and indication that this is varied; prevalence will depend upon the definition being used and this will determine the inclusion criteria.
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🦋 What’s the thyroid, and why is it important? In this short video, we dive into thyroid disease, covering key points about conditions like Hashimoto’s and Graves’ disease. Discover symptoms to watch for, how it’s diagnosed, and treatment options available. Stay informed and empowered! Don’t forget to like, share, and subscribe for more quick health tips!
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One of the most perplexing fields of medicine is the autoimmune diseases. Conditions where the body misfires and attacks itself. In Graves’ disease an abnormal autoimmune response leads to the release of antibodies, which damage the thyroid.

“And it will stimulate the thyroid gland to produce more hormones. So when you have overproduction of that hormone that will affect your metabolism,” explains Lee Memorial Health System endocrinologist Dr. Heitham Ajlouni.

A rare disorder, it’s most common in young women. The symptoms, while noticeable seem to point to a mystery malady. Studies show it takes several doctor visits, often to different specialists to finally make the diagnosis.

“You will start losing weight regardless of your appetite. The other thing you have is a fast heartbeat. You have changes of your hair and skin. You will have heat intolerance, excess of sweating. Graves’ disease effect the eye, so their eyeball will protrude,” says Dr. Aljouni.

The cause of Graves’ is still a mystery. But there are some clues: a family history makes it likely there’s a genetic predisposition. Females are more likely to have it and it usually appears before age 40. Having another autoimmune disorder is also a red flag.

“It’s associated with other autoimmune diseases like rheumatoid arthritis or cirrhosis or pernicious anemia, because if you have one or two immune disease you are at higher risk of having another autoimmune disease,” says Dr. Aljouni.

Once diagnosed, patients have choices of medical managements. With the mystery solved, it’s important to get treatment or risk serious health consequences.

View More Health Matters video segments at leememorial.org/healthmatters/

Lee Memorial Health System in Fort Myers, FL is the largest network of medical care facilities in Southwest Florida and is highly respected for its expertise, innovation and quality of care. For nearly a century, we’ve been providing our community with everything from primary care treatment to highly specialized care services and robotic assisted surgeries.

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You mentioned that you received a letter in the mail saying that your baby has an unidentified hemoglobin trait, and of course, you’re wondering what that means. Ultimately, I suggest talking with your pediatrician about it, and they’ll be able to give you tailored information and advice. Generally speaking though, an unidentified hemoglobin is discovered when we do routine testing on a newborn, and it doesn’t mean that the baby has a disease or that they’re sick. They’re healthy, but they have an unidentified hemoglobin trait. And basically, what that means is that one parent passed on a normal hemoglobin trait, and the other parent may be a carrier of an unusual hemoglobin trait and passed that along to the baby, so then they have an unidentified hemoglobin trait.

Most types don’t cause problems. You’re doctor may recommend that your child is retested as he or she gets older, because as a person starts to make adult hemoglobin, the unidentified trait disappears. It might also be a good idea to talk with a genetic counselor, because they can discuss if this has any implications for future children or for grandchildren. If you have more questions for me in the future, feel free to ask them on our Facebook page at http://www.facebook.com/IntermountainMoms, and recommend us to your friends and family too.
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Learn everything you need to know about keratoconus and keratoconus treatments. To learn more about keratoconus treatment options check out our full series: https://www.youtube.com/watch?v=kPanFRVV4uM&list=PLzi60fSuOmPD3YkK4dR29f9fz_tu0dTNr

Keratoconus is an eye disease where the cornea(the front clear window to the eye) progressively thins and becomes distorted, often bulging outward in the shape of a cone. This warped appearance to the surface of the eye often results in high levels of irregular astigmatism which can cause high levels of blurred vision, glare and visual distortions.

Anyone who is diagnosed with keratoconus and shows signs of progression should consider having a procedure called corneal collagen cross linking; A new keratoconus surgery that has been FDA approved for to help treat keratoconus and slow or hopefully halt the progression of the disease.

People with keratoconus often have the best eyesight with the use of specialty contact lenses. These may include both hard and soft contact lenses but many eye doctors prefer the use of scleral contact lenses for keratoconus.

PRO TIP
The development and progression of keratoconus is more common in people who rub their eyes frequently. To learn more about this see my YouTube Short on eye rubbing: https://youtu.be/Fvsx27YTwgs

📒 Show Notes and Resources 📒

Learn More about Corneal Collagen Crosslinking https://youtu.be/7ZpYe-VTEes
Learn about Scleral Contact Lenses: https://youtu.be/5UkYKwHIQyU

0:00 Keratoconus Explained
0:37 Keratoconus Video Series
1:25 What is Keratoconus
2:28 Symptoms of Keratoconus
3:45 Causes of Keratoconus
4:54 Keratoconus Diagnosis
6:26 Keratoconus Treatment
6:45 Keratoconus Surgery
7:31 Keratoconus Contact Lenses

Previous Livestream I did about Keratoconus and Keratoconus Treatments

More info about keratoconus
https://www.livingwithkeratoconus.com/
https://www.nkcf.org/

Scleral Lens Education Society
https://sclerallens.org/find-fitter/

Does Keratoconus run in your family?
Check out the new genetic eye test, Avegen from Avellino Labs https://www.avellino.com/en/products/avagen-test/

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About This Video: What is keratoconus? In this video we explain keratoconus and how keratoconus is treated. If you, a friend, or a family member have been diagnosed with keratoconus than this video should help you better understand the causes of keratoconus, how it is often diagnosed and the best steps for keratoconus treatment.

#keratoconus #astigmatism #doctoreyehealth

MEDICAL ADVICE DISCLAIMER: All content in this video and description including: infor­ma­tion, opinions, con­tent, ref­er­ences and links is for infor­ma­tional pur­poses only. The Author does not pro­vide any med­ical advice on the Site. Access­ing, viewing, read­ing or oth­er­wise using this content does NOT cre­ate a physician-patient rela­tion­ship between you and it’s author. Pro­vid­ing per­sonal or med­ical infor­ma­tion to the Principal author does not cre­ate a physician-patient rela­tion­ship between you and the Principal author or authors. Noth­ing con­tained in this video or it’s description is intended to estab­lish a physician-patient rela­tion­ship, to replace the ser­vices of a trained physi­cian or health care pro­fes­sional, or oth­er­wise to be a sub­sti­tute for pro­fes­sional med­ical advice, diag­no­sis, or treatment. You should con­sult a licensed physi­cian or appropriately-credentialed health care worker in your com­mu­nity in all mat­ters relat­ing to your health.
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Join Gail Devers, a 3x Olympic gold medalist, as she leads a conversation about Graves’ disease and Thyroid Eye Disease (TED) with fellow advocates Beatriz, Jake and Jannette. In this impactful roundtable discussion, the group chats about their journeys to diagnosis, the symptoms of both diseases and the emotional impact of living with these two separate, but related autoimmune conditions.

To learn more, visit www.FOCUSonTED.com and join the Listen To Your Eyes communities.
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Podcast: www.podcastone.com/pd/Listen-To-Your-Eyes
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GLAUCOMA THE EYE PRESSURE DISEASE

** THE STORY OF IMPROVING EYE FLUID CIRCULATION**

NEVER MISS EMBOOZI Z’OMUKENKUFU

EVERY TUESDAY AT 10: 30 AM ON 87.9 Akaboozi fm

# THE PROF STORY# EYE HEALTH
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What does Hemoglobin E mean in English?

What is sickle cell anemia? Sickle cell anemia is an autosomal recessive genetic condition where the beta-globin protein subunit of hemoglobin is misshapen, which ultimately leads to a sickle-shaped red blood cell, which is prematurely destroyed and can get stuck in small blood vessels. Find our full video library only on Osmosis: http://osms.it/more.

Join millions of current and future clinicians who learn by Osmosis, along with hundreds of universities around the world who partner with Osmosis from Elseiver to make medical and health education more engaging and efficient. We have unparalleled tools and materials to prepare you for success in school, on your board exams, and as a future clinician. Sign up for a free trial at http://osms.it/more. If you’re interested in exploring an institutional partnership, visit osmosis.org/educators to request a personalized demo.

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© 2024 Elsevier. All rights reserved.
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