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1.6 mg/kg/d what does this mean? If i calculate rightly 1.6 mg per kg will be 80MG for a 52KG person? Isnt this too high?

My son was just diagnosed with SPS. He was lucky enough to live in the Chicago metropolitan area of the US. My husband and I are lucky enough we don’t live too far from them. He started having symptoms in April 2024. He’s been having major issues including affecting his breathing. He is 40 years old. His wife is wonderful. I’ve been trying to find out about the disease and treatments. His doctors are just trying to get the flares calmed down and getting a treatment plan in place. I must say hearing you talk makes me very scared. He works as an architect and project manager I. Downtown Chicago. They’ve made a medical accommodation and allowed him to work from home home for the next year and then reassess to see how it’s going.

My disease is also Fibrodysplasia ossificans progressiva😢😢. My age is 33

What a great mom

I have this. I consider it an autoimmune disorder. It’s been about 20 years since it started plus 15 years of being a childhood asthmatic. The problem is entirely caused by allergens. It’s extremely difficult or impossible to avoid allergens entirely. Besides that I’m still not totally sure of what I am or am not allergic to. Some things for sure I’m allergic to are animals with fur, marijuana, wheat food, dust, beer, nuts. Basically it causes endless burping, asthmatic symptoms, stomach contents moving upwards, chest pain, high blood pressure. The condition is potentially life threatening due to the increased pressure on the heart over long periods of time. The disease only affects me as noted. I’m otherwise healthy able and normal. I don’t know for sure but I believe the condition is a result of a childhood virus or illness.

Where is your hospotal

HPV tested negative am currently on TH-cam seeing Drapalahealing names everywhere glad lots of people actually believe him.God bless you sir.

Hello I am ajesh a fshd patient from India. Happy to hear the development of del brax. At last l am happy to see the light in the tunnel.Next question is will it be affordable for people like me from countries like India..

I have pompe disease. I live in the UK. Unfortunately ert hasn't worked for me so I would be really interested in taking part in this trial

I have Pompe and live in England. Long time for diagnosis, but eventually on ert, now for 9 years and 2 years ago swapped ert as I had plateaued. Thank you for developing a new drug for us ❤

Canada? How do we get into a trial for this

My grandson has myotonic dystrophy type 1 along with Factor 5 blood clotting disorder. He has blood clots in both his legs and underwent a arterial bypass on his right leg that sort of worked. He has to take lovonox shots in the stomach twice a day as no other blood thinners worked at all. We live in Louisiana and have had an impossible time trying to locate the doctors he needs with any knowledge of these two combined disorders. He's now 31 and on total disability. We don't know where to turn. Could you post something in response that could help us?

God bless DR ALAHO OLU on TH-cam channel for curing my HIV.. After many test my results came out HIV Negative. I’m grateful doctor….

develop some pills for us the needle bs is fried and so is this gene therapy

Thank you! This is the best video for people with messed-up surgery. I lost 1 "good" Parathyroid + 1 Adenoma. I was not informed with one word, and found out only many weeks later, when I saw the written report of the surgery. I have been supplementing on my own (no trust in Drs.), but I have been unable to find useful guideline for proper amounts of supplements. Are there any lists with suggestions??? My guidelines are pain, muscle weakness, cramps in feet, Body Pain from damaged Vagus Nerve. . It is hard....

What is new treatment sir ?

In July 2023 at the age of 10 my sons heating seemed to decline, it was perfectly fine before, a year late age 11 and many test he has been diagnosed with ANSD, this has been really hard for him as he can no longer communicate with friends etc, we are awaiting genetic testing and being referred for the cochlear implant, I’m really hoping this works for him 🤞🏽 we are also awaiting genetic testing

Any medication you recommend for type 3 ? Currently told to use Zyrtec and fizyr if ever get a extreme attach in tongue or airway

Hello!

No mention of the Nigro protocol? Why not? That is the treatment for this cancer, if caught early it is in fact curable.

🔬👩‍⚕️🖊️🦅🦄

It took me decades to get a diagnosis, but I am totally off the charts on immunology problems. I was decades just to get recognized as a complex immune patient and was male. That is unusual, and all my conditions are rare so no one even thinks of them. I pray this is the only condition you develop, and it does not expand to other conditions - For women this is a young age event (20-40 typically), and for the rare men this happens to it usually hits between 40-65. If your are not seeing an immunologist, you might just get a baseline of where your are in case you notice changes. I am another Marine (tells you about Navy Medical). I complained for over 14 years, and was put out without a retirement as a Gunny. I was selected for MSgt, but I was on medical hold and was not promoted. It took another 15 years for someone to give up and say, let's try an Immunologist......... I blame it on Camp LeJeuene water. I understand @MichaelChaseAtlanta. If you are a Marine, you adapt, improvise, and overcome. There is no other state of mind for us, and it has helped keep me sane. I hope your journey in life improves and you can meet and exceed your goals!

How are you madam

Hai

❤

What about this child

I have it too

damn shes hoott but that didnt help her to get approved by fda

I can categorically claim that cortisone and Farxiga do not work on proteinuria after two years of treatment

A am a woman and was diagnosed with MG at 75 after two and a half years of complaining of multiple odd symptoms which did not come present at the same time. Old age, hypochondria depression were suggested! Was finally diagnosed in 2016. Am reasonably stable… it is hard to make people understand that the symptoms can come and go several times throughout the day. I am having DV as I try to type this and my head feels too heavy for my neck to hold up. Symptoms started after an infection with Chikungunya virus. it was so frustrating telling my story over and over. Getting even a rare disease diagnosis was a relief, I was not mad, it had a name. Good luck going forward with your life.

Thank you for talking about this

Too bad the fda didn’t approve. Maybe 2025?

Thank you for this. I really needed some information that is not coming from doctors.

When will the drug be out?

Hi my niece is also involve in this condition Lekodistroohy disease we are very sad and dis heart plz you must send me this type of patients and solution bcoz we r very upset 😢.

Did something change about the "cure"? 😅 Asking because I have this in my family and it's not good. Tks! 😊

I just started el fabrio

Elfabrio should have been granted 1 a month dosing with the original submission. Huge quality of life improvement to cut dosing in half.

Hi, any treatment for FUS ALS

Well said! We need more medical professionals who have this mindset!

My granddaughter suffers from MMA Mut and has almost died twice. She was participating in the Hemoshear trial at Vanderbilt and the medicine was working wonders. Her acid levels dropped from over 400k to under 10k. Sadly money for the trial dried up and the trial was discontinued. All I could think was with so much waste of money there wasn't any for a medicine that actually works. I have been following this trial hoping that it will produce a therapy that works and makes it way to help these sick children. God bless you for all you do!!

Genetic mismutation or change. Drastic generational trauma, harmful food, gut dysfunction, all kinds of possible causes must be suspected. Need more research.

Hi checkcare pls do video NGLY gene and AIPL1 gene and DNM1 gene and NSF gene trials purpose

If there anyway I can text you in IG or Fb because my bf have the same disease you have n I want u ask u more questions

Very helpful

What was it called before 1870?

My little 2y old son has LCA. Genetic testing revealed gene GUCY2D. Is luxturna applicable also in this case? I’ve read about ongoing clinical testing for treatment of that gene.

Wow Well Explained ❤

Thank you for your video 💕

I need this can you please helpe me?