My EDS Diagnosis Story👩‍🦽(Ehlers Danlos Syndrome). How I was Diagnosed with Ehlers Danlos Syndrome

Подписаться 1,2 тыс.

Просмотров 3,5 тыс.

50% 1

May is EDS awareness month so I'm sharing my diagnosis story to raise awareness about Ehlers Danlos Syndrome and hopefully help close the gap in diagnostic time for future EDS patients to help make earlier intervention possible
Symptom and Diagnosis Story Playlist: • Symptom & Diagnosis St...
My Symptoms of EDS (Ehlers Danlos Syndrome):
EDS Playlist: • Ehlers-Danlos Syndrome...
How I was diagnosed with CCI: • How I was Diagnosed wi...
Symptoms of CCI:
How I was diagnosed with MALS: • My MALS diagnosis stor...
Symptoms of MALS: • MY MALS SYMPTOMS (Medi...
Q&A Did EDS and MALS affect me during childhood (conversation with my mum): • Q&A: Did EDS & MALS af...
🌼🌼🌼
🌸My MedPlanner is from Mightywell, I really enjoy using it and find it really helpful and useful for life with illness/disability
* To visit Mightywell, click my unique link here:
mighty-well.com/discount/PURPO...
Use the code 'PURPOSE10' in the checkout to receive 10% off. (I will receive a small commission from this with no extra cost to you).
🌸Where do I get my music? Epidemic Sounds - *Here is my unique link, I will receive some benefit if you sign up with it ;) share.epidemicsound.com/lfjqo2
*=affiliate links
🌼🌼🌼
If you're new here, here are some videos you may want to check out ;)
📚If you like books, check out my book playlist for reviews and monthly wrap ups: • Books :)
🐶If you like Puppy's we have one: • Our Puppy Amaya
🌺Non Medical Videos (get to know me): • Non- Medical Videos. G...
🙋Q&A's and FAQ's: • Q&A's and FAQ's
Some Info about my Symptoms/Conditions and Diagnosis stories:
👩‍🦽My EDS Diagnosis Story:
👩‍⚕️ Symptom Videos: • Symptom Vidoes
🚦Medical Road Trip Series: • Medical Road Trip Series
🦓Ehlers Danlos Syndrome (EDS) Playlist: • Ehlers-Danlos Syndrome...
⚕️Appointment and Testing Vlogs: • Appointments and Testi...
🦒CCI and AAI Playlist: • CCI & AAI (Craniocervi...
🤢MALS playlist: • MALS (Median Arcuate ...
🩺Surgical Feeding tube experience: • Surgical Feeding Tube ...
🍼Feeding Tube Playlist:
💛 Endometriosis and Adenomyosis: • Endometriosis and Aden...
🏥Hospital Vlogs: • Hospital Vlogs
💓POTS playlist: • Postural Orthostatic T...
Here's What's Helped:
👍Things that have helped playlist: • Things that Have Helpe...
💙Trauma - Healing and processing: • Trauma - Healing and P...
🥳Celebrating Improvements: • Celebrating Improvements
Real Talk
☎️Real Talk Playlist - Some of the reality's about life with chronic illness and disability: • Real Talk
👰Wife, Marriage and Absence of Children Playlist: • Marriage, Wife Chats a...
Life:
🐊Day in the life vlogs: • Day In the Life Vlogs
🕔 Routines: • Routines
🎥Weekly Vlogs: • Weekly Vlogs (Filmed 2...
🌼🌼🌼
🌷In this Video🌷
👗What I'm wearing
🧴 Products
🌼🌼🌼
🔗Links 🔗
My Link Tree:
linktr.ee/purpose_in_this_jou...

Опубликовано:

25 июл 2024

Ссылка:

Скачать:

Готовим ссылку...

Добавить в:

Мой плейлист

Посмотреть позже

Комментарии : 19

@elinkeykramme6511 10 месяцев назад

Im from Denmark, Scandinavia, and have EDS, i have never mett anybody with this condition, and doctors knows nothing. Sending my fellow EDS` a giant hug.. your not alone❤

@iammellbell 10 месяцев назад

Thank you, hugs right back to you!

@melissafarrugia9531 9 месяцев назад

Mel Bel thank you for sharing your experience with living with EDS undiagnosed for so long. It really has helped me to persevere till I have answers. If I have crohn’s i would understand because my Mum has it, but I have symptoms of fibromyalgia and the flexibility has always been there for me. I’ve experienced having trouble to sit because I’m in pain and feel tired far too often, especially I noticed it occurring after eating and now I feel very sleepy half way through dinner at night. I’ve always been active, a high achiever too, but I know that we have potential we just can’t utilise physically, because of fatigue pain and energy levels but I want you to know that You Mel have helped another Mel to feel like I’m going to find the answer. I’m 46. Thanks for giving people hope who perhaps are suffering this and are still looking for answers.

@iammellbell 9 месяцев назад

Awh thank you so much for your encouragement

@elinkeykramme6511 10 месяцев назад

I try to get up every day, just to walk around, its the best thing for me, i also get a lot of morphine and Fentanyl, but i still have a little bit of Life, as im always telling people about my short comming, they do not get surprised when im not okay, it also took me 6 years to get a diagnose. I was diagnosed in my mid 20` im 50 now, so hang in there.

@residentialpsycho1075 Год назад

Thank you for sharing your story. It resonated with me and many of my symptoms. I struggle a lot with nausea. When I was in elementary school, my pediatrician said I didn't have EDS because I didn't have problems with dislocations, but my mother believed he was just too lazy to look into it. I developed POTS over a decade ago and have many autoimmune issues. I'm hoping to get answers and improve my life quality by seeking an EDS evaluation next month.

@iammellbell Год назад

Thank you 😊 I'm so sorry you're going through this! There is a possibility your mum is right as a lot of EDS patients don't have dislocations. I think there is more being known about EDS now so I hope it helps others get diagnosed sooner and accurately

@justchronicalex7196 Год назад

Thank you so much for this video Mel. Please stay strong and keep fighting through all the challenges

@iammellbell Год назад

Thank you so, so much! you keep fighting too, I'm cheering for you guys!

@shannongreenwell1278 Год назад

Sorry you’re having to go through this horrible war! But I’m here fighting it right beside you, I also have EDS. My Neurologist is the one that diagnosed me. I have the Classical type ( cEDS). I’m also Epileptic and so my Neurologist treats me for both.

@iammellbell Год назад

@@shannongreenwell1278 Thank you so much, I am sorry for the fight you are fighting too, but you're right, we're all in it together :) I am sorry you have Epilepsy as well as cEDS but glad your neurologist can treat both :)

@shannongreenwell1278 Год назад

@@iammellbell Thank you 🙏 and yes, it’s wonderful that he is able to do that for me. But I’m not fighting this war alone, there’s many people who are fighting it with me.

@ko0974 8 месяцев назад

@@shannongreenwell1278can I ask how did you get him to diagnose or look for it please ? Having issues with my Rhemy as does not think labels matter a HSD is treated same as ESD so no need for label unless Vascular ..but do have app soon with neurologist,and don't want to rock the boat bashing Rhemy as both work in same clinic and friendly

@michelle.marian 11 месяцев назад

Amazing, I'm so close to eds diagnosis after similar struggles my whole life. It all finally fits. Also just now realising how likely it is I've got cci after seeing a hypermobility physiotherapy clinic yesterday. Am also aussie 😉 following and looking forward to watching more of your videos :)

@iammellbell 11 месяцев назад

I'm so glad your starting to get answers :)

@tiffanym1108 9 месяцев назад

I thought there wasn't a gene for hEDS? I don't know. There may be. I have been lied to about my own states genetic test availability. So. It's plausible

@iammellbell 9 месяцев назад

I think they say they haven't found the gene for hEDS yet, but they still class it as 'genetic' the research is all very new and different sources will sometimes say different things