วีดีโอ

Can I ask is there a link between PMDS and prada willi?

This sounds very promising. Thank you. We're waiting on the gag results from my two year old boy. Im really hoping he hasn't got MPS but my gut tell me he has. Great work 👍

I identify so much with this. I have a currently undiagnosed systemic illness that appears to be an autoimmune condition but may also be genetic, and I have not gone down that pathway yet. I feel like some specialties do not collaborate with others or consider my health holistically, thus why I do not yet have a unifying diagnosis.

I have cmt a am a gamer hearing this makes me worried one day i will no longer be able to play video games

Often the pain is debilitating and at times I wanna give up but I try to be strong. I pray your journey is long and successful.

This is the only video I've found that recommends the support groups. Thank you! I've needed this.

Hemophilia the most expensive deases ever 🤔

Unfortunately Iga nephropathy is incurable and in 20-30 years may lead in some patients to ESKD

My oncologist thought I had metastatic melanoma but after six months and three Immunotherapy opdualog treatments he determined it is sarcoidosis but recommended i stay on Immunotherapy for at least a year because the masses are shrinking

I’m on that drug - I have been for 16 weeks now, and I just got back my MRI and there’s very little change in size. So at least it’s not growing. I am looking for a natural way because the drug does have side effects that are starting to impact me negatively.

Thank you for this. Recently diagnosed based on careful visual inspection and symptoms. But having trouble finding the right place to get a skin biopsy or biopsies. My oncologist is being changed. He should've caught this last year. And just learned lymph nodes in my chest are swollen based on CT scan. My local skin cancer clinic (I had 9/11 related subcutaneous malignant neoplasm 'skin' cancer five years ago) but the dermatologist I saw today doesn't do blood cancers. Unfortunately lymphoma and leukemia are among the top cancers for 9/11 Responders.

What kind of doctors can help with EDS and pots? I have every symptom for both but whenever I try to ask my doctors for help, they just give me this blank stare and don’t do or answer anything. Everything keeps getting worse. I was always a super limber kid with high anxiety and stomach issues, but just thought it was me. But now I keep getting more and more debilitating symptoms and am at a loss what to do. I’m in my 30s now and I’d never even heard of EDS until 2 years ago.

My son is DMD patient Please help me

Tepezza does NOT WORK! results only last 6 months and all symptoms return. It causes hearing loss and serious dental problems

What kind of doctor do you send the kids to as they become adults❓

Big step forward, for better management of this rare genetic disorder, which shakes humanity for a better future. Stay safe 👍🏼

What kind of doctor do I need to see if I have galactosemia? As an adult every doctor I call say they don't see galactosemia patients

More videos please ❤️❤️❤️

I had an increase in blood pressure which I attributed to my job. During my transition to a new job it was found I had too much protein in my urine which lead to a full physical which diagnosed me with IgA Nephropathy.

Dear sir I am from Bangladesh, sir I did pre lasik test to do lasik, mam saw the report and said I have RP, but I can do Femto lasik if I want, then I saw a good retina specialist doctor and he said I can do lasik, now Can LASIK be done with Sir RP? Patient is 22 years old, can see 6/9 with glasses

Hello, my little brother is 13 and has Proteus syndrome and I think this will definitely be something he will be excited about

I am very poor I have mg . Please help me interm of treatment. Please

Depuis près d'un an j'ai des symptômes d'essoufflement sévère impossibilité de faire du sport, en période de printemps une aggravation des symptômes à se niveau. Maux d'estomac ballonnements qui aggrave mes problèmes respiratoires qui font sûrement pression, sensation d'étouffement. Ont ma diagnostiqué une sarcoïdose mais niveau 1 donc non traitable donc on ma dit patience et en attendant bien sûr des scanners pour voir l'évolution. Tout ces problèmes ont commencé Lors d'une prétendu bronchite avec toux problèmes respiratoires. La toux est passé mais dautres problèmes sont survenus. Si vous avez des conseils ils seront les bienvenus. Merci d'avance.

My brother has HLH - genetic disorder, pls suggest from sep 23 to till date

Is this linked to Ehlers Danlos syndrome? I have EDS and have had several random tumors removed throughout my body.

Iam suffer cmt .i want to treat if possible

I have had no support from any one except my other family members who also have CMT1X my father was miss diagnosed at age 9 and only got diagnosed in his 60's when the rest of us girls were diagnosed in our teens and younger with no symptoms . My younger daughter and her son have been diagnosed , he is 25 and a twin . He has shown his symptoms since age 9 . I became injured in 2021 and I'll after the second COVID shot an now unable to move much on my feet. Can anyone give advice as I am not getting help from doctors in this and surrounding small towns .

why not start with genetic testing? save a lot of trouble, money and catch things much faster before there is so much damage

Thank You for the explanation

What a great mom

My son has LGS. Glad to have found this video. Very informative! I wonder if people with this condition ever speak? My son's not verbal

Would this cream only work on surface bcc's or also with those that have deeper roots? Cream would be ideal!

42 y/o, presented with tumor on optic nerves and lymph node in neck. Dx with sporadic BL stage 4 with 94% Bone Marrow infiltration. A rough chemo regiment: Hyper CVAD+R with vincristine & 4 intrathecal injections. Unfortunately, I had lots of permanent damage from the chemo itself....BUT I"M ALIVE TODAY thanks to my Oncology Drs at SCCA (now FHCC). RIP Dr. Oliver Press :'( You were an amazing person and an awesome Dr!

what are the reasons for this? is there any reason for having this tumor

I’ve been diagnosed with iga last year at 24. 25 now and it impacts my life a little bit should I plan to get old ? Or should plan my life like I’m going to die young.

I didnt realize Julia Roberts has this

My daughter Mackenzie had Propionic Acidemia and passed away in 2008, 6yr's old and was 45 time's in hospital. She was on a very strict diet, like you also said. Her milk was imported from Ireland and was called Maximaid. No protein! I also fed her with a stomach tube. Everything must be measured. Medications: purest form of L/Carnitine 5ml x 3 times a day. Sodium Benzoate 10ml x 3 times a day. Biotin tabs. She used MCT Oil. Special sugars. That was so hard.. But I'm so greatful that the Lord chose me as her momma and borrowed her to us. Through her i've learned so much. I MiSs her dearly. But i know, she is healed and whole. It's only until we see each-other again. Blessings to all the parents that have childen with rare Metabolic Diseases xxxx ❤

Do you know what causes the philidelphia chromosome? Is it linked to radiation exposure?

There is at least one Hemeonc on YT and I know there are more, that emphasize immune systems analysis and fixes related to CLL. The proof for me came when I was Dx a year and half ago. I had extreme weight loss and typical symptoms however, I started taking something with a strong activity against leukemia that I learned about 20 years before it happened to me. My lab numbers did not escalate during high symptoms. My hemeonc didn't think I had it and tested me for valley fever! I hope to share and help many people through a website I am building. I am retired from the integrative medicine field.

Assalomu alaykum shu kasallikni da'vosi bormi

where are they doing this?

Hi Dr I'm on of a cidp paitont I'm asking about thenew drug named eftigimod

For most of my childhood and early teenage years I thought everyone had the world go black in front of their eyes when they stood up.

How i can get gene therapy im from algeria I have hemophilia b

Need a cure

Lost my daughter of 2 years ago to PA! Miss her so dearly!

Any updates? How can we get this treatment?

How to I sign up my wife?

I have x linked icthyosis which has been resolved by using a sauna tent 15 mins every other day

Commendable research and innovation indeed. I would like to ask if this is approved for the graft recipient.