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ERN ReCONNET
Добавлен 23 мар 2018
Welcome to the ERN ReCONNET official RUclips channel!
Here you will find videos, tutorials, and many others contents upon the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases, the European Reference Networks and other initiatives.
Subscribe to our channel, follow us on our Social Media, and subscribe to our Newsletter to stay always updated with our initiatives and actions!
Here you will find videos, tutorials, and many others contents upon the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases, the European Reference Networks and other initiatives.
Subscribe to our channel, follow us on our Social Media, and subscribe to our Newsletter to stay always updated with our initiatives and actions!
1st Myositis Summer School of the Myositis Network Germany endorsed by ERN ReCONNET (GER)
The voice of participants.
Просмотров: 6
Видео
1st Myositis Summer School of the Myositis Network Germany endorsed by ERN ReCONNET (GER)
Просмотров 524 часа назад
Prof. Muller-Ladner message.
The optimization of glucocorticoid therapy for long term treatment in Connective Tissue Diseases
Просмотров 26021 день назад
Short description This webinar is focused on the optimization of glucocorticoid therapy for long term treatment in Connective tissue Diseases (CTDs). Glucocorticoids (GCs) are essential in managing life-threatening autoimmune diseases and a cornerstone in many CTDs given their swift onset of action, necessary in flares. Several studies (RCTs) and meta-analyses have demonstrated that when admini...
Explaining Systemic Sclerosis (SSc) to family and friends
Просмотров 160Месяц назад
Short description This webinar brings together 2 European patient representatives and 2 European experts familiar with systemic sclerosis (SSc). It will be an interactive presentation. The ePAGs will start by presenting their disease in laymans version for patients, family and friends and for caregivers who want to learn about systemic sclerosis and how to explain their disease and the SSc expe...
Preconception Care in Patients with Connective Tissue Diseases
Просмотров 1492 месяца назад
Short description Preconception care is defined as a set of actions taken before conception which are designed to: - Identify and modify the medical, behavioral and social determinants of female and male health - Create optimal conditions for pregnancy - Minimize the risk of complications during pregnancy BUT ALSO for maintaining the health of the offspring throughout their lives. Preconception...
ERN ReCONNET GOOD PRACTICE SHARING INITIATIVE 2024 - 2nd Edition
Просмотров 1682 месяца назад
This important event has been organized by the ERN ReCONNET Working Group (WG) Research and Quality of Care led by Dr. Rosaria Talarico, our Scientific Coordinator, and ePAG Ilaria Galetti. Last year, the event was a great success and for this new edition we look forward to discuss with all the participants the following topics: - Introduction from the Chairs of the ERN ReCONNET Research and Qu...
Everything you always wanted to know about Ehlers-Danlos Syndrome (EDS)
Просмотров 5922 месяца назад
Short description The aim of this webinar is to solve all those questions about EDS from the patient and caregiver community that remain unclear to them. The webinar is driven by patients, and it is meant to be interactive. The questions are previously collected through a survey launched by the EDS DG, and answered live by experts. Both experts and ePAG advocates in the DG can prepare the conte...
Update on Hypermobile type of Ehlers-Danlos Syndromes (EDS).
Просмотров 5653 месяца назад
Update on Hypermobile type of Ehlers-Danlos Syndromes (EDS).
2023 ACR/EULAR AntiPhospholipid Syndrome (APS) classification criteria
Просмотров 1,1 тыс.3 месяца назад
2023 ACR/EULAR AntiPhospholipid Syndrome (APS) classification criteria
French practical guidelines for the diagnosis and management of Relapsing Polychondritis (RP)
Просмотров 7304 месяца назад
French practical guidelines for the diagnosis and management of Relapsing Polychondritis (RP)
Unravelling 50 years of Mixed Connective tissue Disease (MCTD)
Просмотров 9424 месяца назад
Unravelling 50 years of Mixed Connective tissue Disease (MCTD)
ERN ReCONNET Webinar Calendar 2023 - 2024
Просмотров 1074 месяца назад
ERN ReCONNET Webinar Calendar 2023 - 2024
Juvenile Onset Systemic Sclerosis: Insights on an Orphan Disease
Просмотров 1485 месяцев назад
Juvenile Onset Systemic Sclerosis: Insights on an Orphan Disease
10 questions in Relapsing Polychondritis (RP)
Просмотров 6935 месяцев назад
10 questions in Relapsing Polychondritis (RP)
ERN RECONNET - ENDORSED EVENT: 43RD EUROPEAN WORKSHOP FOR RHEUMATOLOGY RESEARCH (IT)
Просмотров 475 месяцев назад
ERN RECONNET - ENDORSED EVENT: 43RD EUROPEAN WORKSHOP FOR RHEUMATOLOGY RESEARCH (IT)
ERN RECONNET - ENDORSED EVENT: 43RD EUROPEAN WORKSHOP FOR RHEUMATOLOGY RESEARCH (EN)
Просмотров 415 месяцев назад
ERN RECONNET - ENDORSED EVENT: 43RD EUROPEAN WORKSHOP FOR RHEUMATOLOGY RESEARCH (EN)
ERN RECONNET - ENDORSED EVENT: II XUEC CONFERENCE ON SYSTEMIC AUTOIMMUNE MINORITARY DISEASES (EN)
Просмотров 335 месяцев назад
ERN RECONNET - ENDORSED EVENT: II XUEC CONFERENCE ON SYSTEMIC AUTOIMMUNE MINORITARY DISEASES (EN)
ERN RECONNET - ENDORSED EVENT: II XUEC CONFERENCE ON SYSTEMIC AUTOIMMUNE MINORITARY DISEASES (Cat.)
Просмотров 295 месяцев назад
ERN RECONNET - ENDORSED EVENT: II XUEC CONFERENCE ON SYSTEMIC AUTOIMMUNE MINORITARY DISEASES (Cat.)
Young people with childhood Lupus: do they need a different approach in adult life?
Просмотров 1625 месяцев назад
Young people with childhood Lupus: do they need a different approach in adult life?
ERN RECONNET - ENDORSED EVENT: THE 5TH INTERNATIONAL SYMPOSIUM ON IGG4 - RELATED DISEASE (IT)
Просмотров 1306 месяцев назад
ERN RECONNET - ENDORSED EVENT: THE 5TH INTERNATIONAL SYMPOSIUM ON IGG4 - RELATED DISEASE (IT)
ERN RECONNET - ENDORSED EVENT: THE 5TH INTERNATIONAL SYMPOSIUM ON IGG4 - RELATED DISEASE (EN)
Просмотров 946 месяцев назад
ERN RECONNET - ENDORSED EVENT: THE 5TH INTERNATIONAL SYMPOSIUM ON IGG4 - RELATED DISEASE (EN)
Characterization of pain in connective tissue diseases and its management. Everyone's problem.
Просмотров 3866 месяцев назад
Characterization of pain in connective tissue diseases and its management. Everyone's problem.
Refractory Systemic Lupus Erythematous (SLE): Identification and pharmacological management
Просмотров 4588 месяцев назад
Refractory Systemic Lupus Erythematous (SLE): Identification and pharmacological management
Anti-nuclear antibodies: Practical tips on when, why and how
Просмотров 7938 месяцев назад
Anti-nuclear antibodies: Practical tips on when, why and how
Treatment options in Idiopathic Inflammatory Myopathies (IIMs)
Просмотров 7199 месяцев назад
Treatment options in Idiopathic Inflammatory Myopathies (IIMs)
ERN ReCONNET @ EULAR2023: ePAG's Coraline Bouillot opinion (FRENCH)
Просмотров 619 месяцев назад
ERN ReCONNET @ EULAR2023: ePAG's Coraline Bouillot opinion (FRENCH)
Systemic sclerosis (SSc) patients and doctors: A win win alliance
Просмотров 20010 месяцев назад
Systemic sclerosis (SSc) patients and doctors: A win win alliance
ERN ReCONNET Clinical Patient Management System (CPMS) in French
Просмотров 7910 месяцев назад
ERN ReCONNET Clinical Patient Management System (CPMS) in French
The multifaceted aspects of nutrition
Просмотров 17210 месяцев назад
The multifaceted aspects of nutrition
ERN ReCONNET endorsed Congress: Prof. Lorenzo Cavagna's opinion (French)
Просмотров 4510 месяцев назад
ERN ReCONNET endorsed Congress: Prof. Lorenzo Cavagna's opinion (French)
Are there english subtitles ? thank you
My doctor said that adding an additional medication to aspirin/levonox can cause the baby to half clif lip 😢
Had MCTD diagnosis 15 years ago, has been drudgery of constant aching and soreness, along with POTS dysautonomia and a myriad of other problems blah blah blah in January I did a three month stint of chemotherapy for testicular seminoma recurrence neck and back after having radical lymph node dissection last summer in my abdomen and near my renal artery that chemo put the MCTD in remission briefly and now, it is back with a vengeance I have lung fibrosis suddenly and my oncologist he spoke to my rheumatologist (unfortunately now retired and I'm without one) and they don't know if the lung damage is due to chemo, or MCTD, or what. prednisone past eight weeks lung shutting down and trouble swallowing now feel like a rag doll hard to move arms and legs, hard to bend over, squat down, hard to get out of bed, or roll over, muscles all weak and inflamed (I am not sedentary I'm pretty active considering this pain because activity makes it worse, but makes the pain slightly more bearable, so it's worth it, besides, I am in so much discomfort that I can't relax anyway so I'm always trying to stretch, exercise etc) have the worst feeling in my neck shoulders and hips and back, legs are numb, ankles are so tight they won't flex hip flexors and knee and elbow flexors so tight that I'm getting joint jam up all over my body and femoral impingement one one side from torsion had been on hydrochloriquine but stopped after doctor retired mostly I want to comment on the 'brain fog' ; It seems considerably worse to me than to call it that. Fog is pleasant. This is horrible. I feel like I got dropped on my head, can't clearly think except that it hurts and I'm tired and I need to lie down. Literally, like a person with hyperthermia, I'm constantly thinking I need to lay down and rest. Every damn moment. And have to tell myself if I do that, I will decondition. But I literally don't want to move. Hard to see the point living like this, except that I have adult children who I want to be around for that's it. The only thing that keeps me going, my kids. mind you I did go through chemo, but I felt like this before cancer, now, after surviving cancer, it's just that the MCTD is getting much much worse, fast so that's actually pretty interesting to feel it escalating Brain fog, not really a strong enough term for my liking more like cognitive impairment significant, memory significantly impaired by high pain and tension This much chronic pain with the weakness creates an existential hopelessness that your body just knows it's doomed and it's never going to stop hurting. This sucks hang in there, I'm sorry y'all are suffering like me I wouldn't wish this on my worst enemy
I was diagnosed with APS 4 years ago. Weirdly sometimes my test comes back negative and sometimes positive. What would be the best course of prevention before I undergo Plastic surgery? I do take XORELTO daily Thank you!
I'm 68yrs and I found out that I have anti phospholipid antibodies syndrome 2023 of September
Planet Ayurveda's treatment for Sjogren's Syndrome is amazing. It's the best I've tried, and it really helps with my dry eyes and mouth.
The EDS/HSD Society (in US) has a world wide registry of everyone diagnosed (and not yet diagnosed). They encourage everyone to signup in the registry as this helps with writing grants for funding, AI statistical searches as well as gives researchers a group of people who match their criteria for their research.
Does anyone know of a doctor who can treat me in SE USA. I have had 3 confirmed peripheral blood tests igg4 levels high. I have had 3 parathyroids and 1/2 of thyroid removed. I had a huge thyoma that grew up north sides of my neck removed at Callahan Head Surgery at UAB (univ of Alabama). I always have high ALT, Lipase, CRP. I had 2 VECTRA blood test with the last about 17 months ago in Highest level. Anemia and Fe infusions and .10% immature granulocytes. Adrenal gland removed on left kidney. I had a hysterectomy about 10 years ago when this all started. NEVER HAD ANY covid immunization or illness. Please if you know a doctor in Alabama, Virginia, Georgia, Maryland.... Anywhere in southeastern USA, PLEASE HELP ME. 💔
Prayers Sweetheart, l am also suffering from MCTD syndrome and eds Ehlers danlos a lot of mass cell allergies,sick with symptoms as a child growing up l have through the years always trying to explain to Doctors how l have felt , put up with gas lighting and all kinds of abuse had scoliosis hyper mobility gastrointestinal issues gallbladder removal, hysterectomy, breast pain joint pain , car sickness, thyroid issues, just all kinds of things going on complaining to anyone who could listen going to libraries searching medical information then the doctors, internet thank God for the internet, my mean doctor has been so hateful to me but l don’t have the strength or energy to go anywhere else and have stopped going to him lam just wanting to leave this earth ❤🙏waiting on God to take me
Prayers Sweetheart, l am also suffering from MCTD syndrome and eds Ehlers danlos a lot of mass cell allergies,sick with symptoms as a child growing up l have through the years always trying to explain to Doctors how l have felt , put up with gas lighting and all kinds of abuse had scoliosis hyper mobility gastrointestinal issues gallbladder removal, hysterectomy, breast pain joint pain , car sickness, thyroid issues, just all kinds of things going on complaining to anyone who could listen going to libraries searching medical information then the doctors, internet thank God for the internet, my mean doctor has been so hateful to me but l don’t have the strength or energy to go anywhere else and have stopped going to him lam just wanting to leave this earth ❤🙏waiting on God to take me
Does anyone know of a doctor who can treat me in SE USA. I have had 3 confirmed peripheral blood tests igg4 levels high. I have had 3 parathyroids and 1/2 of thyroid removed. I had a huge thyoma that grew up north sides of my neck removed at Callahan Head Surgery at UAB (univ of Alabama). I always have high ALT, Lipase, CRP. I had 2 VECTRA blood test with the last about 17 months ago in Highest level. Anemia and Fe infusions and .10% immature granulocytes. Adrenal gland removed on left kidney. I had a hysterectomy about 10 years ago when this all started. NEVER HAD ANY covid immunization or illness. Please if you know a doctor in Alabama, Virginia, Georgia, Maryland.... Anywhere in southeastern USA, PLEASE HELP ME. 💔
Does anyone know of a doctor who can treat me in SE USA. I have had 3 confirmed peripheral blood tests igg4 levels high. I have had 3 parathyroids and 1/2 of thyroid removed. I had a huge thyoma that grew up north sides of my neck removed at Callahan Head Surgery at UAB (univ of Alabama). I always have high ALT, Lipase, CRP. I had 2 VECTRA blood test with the last about 17 months ago in Highest level. Anemia and Fe infusions and .10% immature granulocytes. Adrenal gland removed on left kidney. I had a hysterectomy about 10 years ago when this all started. NEVER HAD ANY covid immunization or illness. Please if you know a doctor in Alabama, Virginia, Georgia, Maryland.... Anywhere in southeastern USA, PLEASE HELP ME. 💔
Does anyone know of a doctor who can treat me in SE USA. I have had 3 confirmed peripheral blood tests igg4 levels high. I have had 3 parathyroids and 1/2 of thyroid removed. I had a huge thyoma that grew up north sides of my neck removed at Callahan Head Surgery at UAB (univ of Alabama). I always have high ALT, Lipase, CRP. I had 2 VECTRA blood test with the last about 17 months ago in Highest level. Anemia and Fe infusions and .10% immature granulocytes. Adrenal gland removed on left kidney. I had a hysterectomy about 10 years ago when this all started. NEVER HAD ANY covid immunization or illness. Please if you know a doctor in Alabama, Virginia, Georgia, Maryland.... Anywhere in southeastern USA, PLEASE HELP ME. 💔
Does anyone know of a doctor who can treat me in SE USA. I have had 3 confirmed peripheral blood tests igg4 levels high. I have had 3 parathyroids and 1/2 of thyroid removed. I had a huge thyoma that grew up north sides of my neck removed at Callahan Head Surgery at UAB (univ of Alabama). I always have high ALT, Lipase, CRP. I had 2 VECTRA blood test with the last about 17 months ago in Highest level. Anemia and Fe infusions and .10% immature granulocytes. Adrenal gland removed on left kidney. I had a hysterectomy about 10 years ago when this all started. NEVER HAD ANY covid immunization or illness. Please if you know a doctor in Alabama, Virginia, Georgia, Maryland.... Anywhere in southeastern USA, PLEASE HELP ME. 💔
Does anyone know of a doctor who can treat me in SE USA. I have had 3 confirmed peripheral blood tests igg4 levels high. I have had 3 parathyroids and 1/2 of thyroid removed. I had a huge thyoma that grew up north sides of my neck removed at Callahan Head Surgery at UAB (univ of Alabama). I always have high ALT, Lipase, CRP. I had 2 VECTRA blood test with the last about 17 months ago in Highest level. Anemia and Fe infusions and .10% immature granulocytes. Adrenal gland removed on left kidney. I had a hysterectomy about 10 years ago when this all started. NEVER HAD ANY covid immunization or illness. Please if you know a doctor in Alabama, Virginia, Georgia, Maryland.... Anywhere in southeastern USA, PLEASE HELP ME. 💔
Does anyone know of a doctor who can treat me in SE USA. I have had 3 confirmed peripheral blood tests igg4 levels high. I have had 3 parathyroids and 1/2 of thyroid removed. I had a huge thyoma that grew up north sides of my neck removed at Callahan Head Surgery at UAB (univ of Alabama). I always have high ALT, Lipase, CRP. I had 2 VECTRA blood test with the last about 17 months ago in Highest level. Anemia and Fe infusions and .10% immature granulocytes. Adrenal gland removed on left kidney. I had a hysterectomy about 10 years ago when this all started. NEVER HAD ANY covid immunization or illness. Please if you know a doctor in Alabama, Virginia, Georgia, Maryland.... Anywhere in southeastern USA, PLEASE HELP ME. 💔
Does anyone know of a doctor who can treat me in SE USA. I have had 3 confirmed peripheral blood tests igg4 levels high. I have had 3 parathyroids and 1/2 of thyroid removed. I had a huge thyoma that grew up north sides of my neck removed at Callahan Head Surgery at UAB (univ of Alabama). I always have high ALT, Lipase, CRP. I had 2 VECTRA blood test with the last about 17 months ago in Highest level. Anemia and Fe infusions and .10% immature granulocytes. Adrenal gland removed on left kidney. I had a hysterectomy about 10 years ago when this all started. NEVER HAD ANY covid immunization or illness. Please if you know a doctor in Alabama, Virginia, Georgia, Maryland.... Anywhere in southeastern USA, PLEASE HELP ME. 💔
You can turn on captions (CC)right top of screen and then translate into your own language Je kunt bijschriften aanzetten (CC) rechts boven in het scherm en dan vertalen in je eigen taal Vous pouvez activer les sous-titres (CC) en haut à droite de l'écran et les traduire dans votre langue. Sie können die Untertitel (CC) oben rechts auf dem Bildschirm einschalten und dann in Ihre eigene Sprache übersetzen Puedes activar los subtítulos (CC) en la parte superior derecha de la pantalla y traducirlos a tu propio idioma.
The U.S. seems behind on educating physicians to recognize and perform simple test for this hyper mobility. Especially for patient safety and recommendations such as, what sports to avoid and interventions to protect yourself etc.
But I don't understand very well, how to arrive to the diagnosis?? If its so difficult and the symptoms so hard to make a gathering. I don't think that in any country the doctors could arrive to the right diagnosis . What kind of doctors should we consult? Thank you
@Desert35 Here is difficult. But thank you.
Some doctors don't like to study "difficult, strange" symptoms so many people will be without the right diagnosis for a long time or maybe they'll never get the right diagnosis. It's easier to diagnose fibromyalgia so the doctors don't have to study, investigate the patient. 😢
Thank you for your excellent presentation.
Excellent extremely useful lecture for me as a rheumatologist. Thank you so much!
also, is there any link to Epstein bar reactivation from the big C and lupus?
Great video is there any link between drug-induced lupus with the prescription Effexor gabapentin and amoxicillin?
Removing my comment/question just proves the vaccine is the problem
Could we get on with it????
The pain is so debilitating and trying to get providers to take a holistic and collaborative approach to my care has been humiliating and tiresome. I don't have RP so they're waiting for me to get worse, despite having PH, connective tissue breakdown, pelvic floor incidence, osteoarthritis, pericarditis...they are being so careful that I'm not getting proper treatment as they hope someone else diagnoses me. I hate that it's so rare because I am sure people like me have been suffering for years being unheard.
Thank you for this presentation. I learned new things about this puzzling disease. I was diagnosed in 2017, after my ENT recognized the symptoms of my first 'flare'. I'm fairly certain that I had RP for years without knowing what was causing my health issues. Hindsight is 20/20, I suppose.
Thanks
I struggle working more days out than working
Thank you this!! We need doctors retrained to believe and find how to help..i do fall under depression 😢
You are very welcome, here is the patient association in case you need: reconnet.ern-net.eu/patients-organisations-rp/
@@ERNReCONNET hello thank you for the resources however I am not in Europe (I wish I was!) I am in the USA
I understand the medical gaslighting.. I severe brain fog but the worse is the pain in my throat or ears the pain in joints. My stomach is affected and my breathing (lungs) ANA positive. The worse is when they cannot further diagnose because there are no further markers in the blood. Most doctors are confused or don't know what to do for you. The tiredness is disabling.. I fall asleep right after breakfast 😮 and tired at 730pm like help me to my bed tired.😢
this diagnosis checks every symptom i experience...my ears can melt ice like a hot knife thru butter, not too mention they are floppy enough to be folded into my ear hole. my nose has large bumpy swollen places inside both nostrils... etc 🙁
I’ve had it for 15 years. Primarily affects my pancreas. I think my dad also had undiagnosed igg4 affecting lungs, kidneys and pancreas. He had pseudo tumors in lungs and one was fibrotic. In a flare now. Such a sneaky disease that makes you feel like crap.
Hi how are you doing? I am new to this disease. My igg4 is super super high 😢 I am 35 yrs old women. I am very scared of this disease and looking for someone to talk about it 😔 🙏
This is phenomenal thank you so much for such a comprehensive, well-rounded presentation!!! And Huge thanks for including the QR codes!!! As a patient this is so encouraging and I hope it’s widely distributed among first-line medical professionals for a better understanding of RP. Well done, thank you!!
Appreciating these videos! (From patient side)
Thank you very much for all the effort and continuous work you do for us!
Where can I find LEAF? I googled and found articles, but if I want to use the tool, where can I find it? Thank you
Thank you, this has been very helpful in learning and understanding UCTD.
Excellent
This was really helpful, thank you
My brother is suffering from this Igg4 disease it effected his kidney, he loss his weight, Firstly we do not know whats the problem and we went to AIIMS Delhi, my brother was treated under Dr.Nitish. For delaying with getting reports and Doctor’s appointment my brother got stone(13mm)in kidney.My family were so worried for my brother and the disease.And after we decided to change the hospital and now he is getting treated by Dr.Abhishek Patil in Manipal hospital Bangalore, The doctor prescribed him Tocilizumab Actemra(it’s a injection)/Mycophenolate (its’ a tablet).The doctor recommend him to take any one of them either injection or tablet, we asked him and he told with his best to take injection.
Here is a link for more info and resources on IgG4-RD: reconnet.ern-net.eu/disease-igg4/
It is hard to read the slides
I hope it's ok if I ask questions as I'm going along instead of one long comment. First question. With the inflammatory natural rhythms of the body would having an opposite circadian rhythm affect this normal cycle of pain? Because the patient sleeps more during the day and is active at night. Therefore their individual rhythm of offset from what the typical person would experience.
I have IGG4-RD as well. 29-year old female, living in Germany. My symptoms started at the age of 16 and I got my diagnosis just three years ago.
Hi, May I ask you what were your symptoms? I have lymph nodes enlarged but they hurt and make me swell. And more strange symptoms. IgG4 is not known in my country. Thank you. May I ask you who's your doctor who diagnosed you in Germany? Thank you!
@@lillyrocks2011 Hi, of course you can. IGG4 started when I was about 15 or 16 with an autoimmune pancreatitis. In the 14 years since then I got inflammation and fibrosis on - who would have thought - my pancreas, my liver, my kidneys, my orbital glands and my salvitary glands as well as my lymph nodes. But only the pancreas really bothers me, because the disease could cause a lot of fibrosis before ist was found. The rest of the inflammation was not noticable until 3 years ago. In 2021 my orbital glands started swelling to about 10 times their size and pressed my eye. I threatened to go blind, so the doctors started to do tests. They soon shifted to my pancreas because of some bloodwork, I presume . They did an MRI and rushed me to the hospital afterwards because the scarring looked like cancer. So I was in hospital when the doctors found out, it wasnt cancer but IGG4-RD. It was a gastroentrologist who diagnosed me in the end, because my pancreas is the organ most affected. He referred me to a rheumatologist and that is where have been getting treated since then.
Hi how are you doing today?
I am also suffering from McTD.. 😢
I am from Chennai my wife also same disease very critical can I help me some contacts no
Lupus class4 can control for medicine plz give the answer
my sister just got diagnosed. and she is thinking that this is a death sentence, and she is actively dying. does having RP a death sentence?
I can't speak to this as an expert or even patient with a concrete diagnosis yet, but I can contribute my personal experiences from the past 3-5 years. Personally, I have various and severe symptoms that correlate to this disorder or another that may be similar that impacts me throughout my body, my nervous system, muscles, joints, eyes, ears, organs, cognition, mind, mental health, and daily basic living has been overwhelming to say the least! My doctors and I are getting closer, though now. It has been quite terrifying at times, extremely painful, and difficult in every area of life with this journey. At 30 to 35 years old, now the difficulty between all the unknown, often unbelieving, or just overextended doctors with such a rare disease, often never quite educated on or ever experienced in practice, even more resistant to understand and support family with struggles to accept such change and significant sickness they can't understand. It has strained my trust in others and often in myself, while knowing and living in my own body. This is just my experience, of course. In the fear, disbelief even with proof of symptoms, damage, and such but with no definite diagnosis yet, personal daily struggle in such pain and handicapp while "looking well enough" to the eye (I suppose), and my age has been such an added stress and grief on top of everything. Hurtful. It is something I have found repeatedly shared by many people suffering from rare diseases as I've sought answers and support. I say all this just to share some of what your family member might be feeling or be going through from systemic body changes that still rarely are all known, researched, connected together, to the pain and limitations, and so many unknowns and limitations in treatments and controlling it. Diagnosis is a great step to health and some recovery, and despite the challenges it is best to keep all hope! I know how hard that can be to have and keep. You caring about them, looking into the disease, learning, and asking questions is amazing!!! Support in this is something everyone of us needs desperately. I don't know the health journey and experiences they encountered along the way to diagnosis but it can be quite rough out here, and in every profession and field right now also, as most individuals have significant life challenges and suffering in one way or another. I really hope the best for you and them in life and commend you for your interest and investment to understand and support your family. Much hugs and love! ❤️🔥🤝
Get in touch with the patient association: reconnet.ern-net.eu/patients-organisations-rp/ Stay strong!
I have it and I'm always in pain. Its so confusing as to which one i have. My dr doesnt really know
Is there a document i can reference that states that all categories of costs should be included in the analysis?