we have just found out my husband has this and he's had his operation. The 1st thing he did when I saw him after surgery, was put his hand on my face and told me how beautiful I was. Having chemo and radiotherapy assessment today🤞🤞🤞

What a very pretty family

I have never heard of this. I have ms, and do a lot of research. Thanks for telling us about it

Congrats 🎉. I’ll be going into the hospital next week for a transplant.

I appreciate you telling your story. I was diagnosed with CLL four months ago. I received 5 units of blood that first week. My white cell count was at 349,000. Hemoglobin was 6.1. The treatment has been going well with very few side effects. I've also been told, "It's the good cancer." It's, "the best of the worst." The psychological aspect of this diagnosis follows me wherever I go. I don't want "the good cancer". As I'm typing this, Federal Express just dropped off another 30-day supply of venetoclax. I'm 62, and I'm hoping to live out my days happy and healthy. I pray that you and your family are doing well. And to whoever's reading this I say, trust in the Lord. He knows what we're going through.

Sandra you’re helping spread awareness by sharing your personal story. Thank you so much for telling us all about this condition that’s so rare . This will help others get a correct diagnosis. My love to you xxx

That is such a wonderful story. When you see Alexa on the screen she really looks like an angel. You are such a trooper Walter! Did you just have symptoms of being tired? It seems so strange how healthy you were and then it was so sudden. I’m glad you made it through!

I’m soooo thankful for your video. I was diagnosed with HAE last week. I received this diagnosis after having 3 attacks (severe lip swelling) in less than 2 months. 45 mins ago at 1:28am… my 4th attack has happened; 𝙏𝘽𝙃 is 𝙘𝙪𝙧𝙧𝙚𝙣𝙩𝙡𝙮 𝙝𝙖𝙥𝙥𝙚𝙣𝙞𝙣𝙜... I took 2 antihistamines and searched up my diagnosis on KZfaq (which has brought me to your video). Thank you. It gives me a better understanding… I’m a 43 yr old female with a lengthy medical history of suffering from GUT issues. I think the relation with my gut has something to do with my new diagnosis of HAE but I’m not 100% certain. Just the same… 𝗧𝗵𝗮𝗻𝗸 𝘆𝗼𝘂. The above video was veryinformative.

Just went through my second melanoma surgery ….. 25 years apart. Thank goodness for MD Anderson Cancer Center here in Houston.

Such a beautiful family ❤

Thanks Kenny, I was first diagnosed this year. I have been telling Dr.s for sometime that something was wrong with me. The first problem arrived while i was working in the construction field. I was lifting a 14ft beam and while i was fitting it in place I felt three pops in my spine. I told the job and they sent me to their doctor. Who told me i was fine and to go back to work. Which i did until i could no longer move without exptreme pain. I had a few buldges in my spine but they told me they shouldnt cause the pain i was describing. They released me not believing what i was saying and i have been unable to work properly ever since. Its been about 10 years. I just had some problems where I find it hard to move. Im in a new area and have a new hospital. They took some ct scans after i went in thinking i was having kidney stones.which ive had before. I had severe pain in my sides. My dr took a blood test and within the week got test results and looked at me saying, you have cancer, its called multiple myeloma. And put me right on treatment.

Sandra thank you for sharing your story and for bringing more awareness to this disease. Thank you for being so inspiring and such a beacon of life. Praying for your stability with this disease and for a cure and better treatments to become available. ❤️🙏🏽❤️🙏🏽 God bless you always. ❤️🙏🏽✝️❤️🙏🏽✝️

This is just depressing. This is definitely not a normal story about chronic back pain. Mine has ruined my life over and over again and i really hope i don't have to grow old.

My husband was diagnosed with cholangiocarcinoma on 8/18/23 at 70 years old. He made 9 out of 12 chemo treatments. His body could no longer handle it. He had surgery on 2/8/24 in which they took 1/4 of his liver. Unfortunately, his cancer came back in 6/24. They are concerned how fast and how much it came back with having 6 new liver lesions. He just finished 8 radiation treatments. He will start in the clinic trial next week with immunotherapy and a cancer drug. Praying every day the new treatment will kill the cancer cells. Please pray for my husband. We have alot of life together to live.

🙏🏾🙏🏾🙏🏾

Sandra, thank you for sharing. You are an amazing and awesome woman. It is amazing what you can do once you set your mind to it. Keep the faith, I believe in the science of the treatment and cure is sure to follow.

Pompe disease is new to me. I’m glad of this opportunity to learn about it. Sandra is a true joy, a ray of light. I’m glad to know a little about her, too. She is so much more than a woman dealing with disease.

My dad passed from an anaplastic astrocytoma ( grade 3 ) He was paralysed down one side. The whole brain radiotherapy gave him a dementia. Weirdly he didn’t have a single headache.

What grace and courage. I’m glad to be aware of Pompe disease, and also to have had the chance to witness Sandra’s heroic life in progress.

I guess it's ok if you've got great health insurance but for the rest of us I guess it's "good luck".

My grandmother had this type of cancer in the late 1990s (she was in her late 80s). She was on chemo pills for a while, I think, and had to have a few blood transfusions. I'm glad that this man is doing so well and that there are more treatment options available now.

Beautiful sons 💙

Cancer is an equal opportunity disease. It doesn’t care who you are, rich or poor, young or old.

Now go search Dr. Thomas Seyfried at Boston University who believes cancer is a metabolic disease which can be prevented and cured naturally. Sugar in particular feeds cancer and must be eliminated from diet among other things.

Thank you for sharing. 🙏🏼⚘✌🏼

I’m so sorry…. I’ve never heard of it. 🙏

You do it ALL 💕💕💕

The feeling of pressure in the throat like something pressing on your neck, doesn’t affect breathing at all??

Sensation of lump in the throat? Is that a symptom?

I think it’s lovely that Judith met a loving husband,who regards Judith as his own….beautiful ♥️🇨🇦

How splendid ❤ really puts things into perspective... a lovely family indeed

I was diagnosed with scleroderma in June last year after 12 months of trying to find out what it was, this gives me hope and power that I can power through this at 46

My wife had zero symptoms of her OC, other than a really brief moment of mild pain in her groin (that went away and never came back). Thankfully, we have an amazing OBGYN and he ordered all the right tests, found a mass, and got her in with a gyn onc that week. He probably saved her life by catching the cancer relatively early, before it had spread. There is still a road ahead and she will also have to be monitored closely. However, recent advancements in targeted therapies, most notable PARP inhibitors, have really changed the landscape for ovarian cancer. It would still be great to be able to catch this cancer earlier via screening, but advancements have been made.

I am 22 years old and have MG though it is mostly restricted to my eyes. It's such a misunderstood disease! Simple tasks, heat, stress, mild infections all turn our symptoms so bad but people are not ready to accept that. University classes and academics get very tough with uncooperative faculties but hey, we can do it thanks to some fantastic doctors❤

What a lovely family! I miss my dad :( Hope Duane continues to do well.

The treatment in incredibly difficult. At this moment if have had my second treatment within a period of 6 years with also the second stem cell transplant. And it took me well over 2 and a half years more or less recover from that treatment. But after 2 and a half years using a new medicine daily called "Leolinamide", my M-protiene levelis still not existend in my blood. At least it's not measurable.

Have you guys ever thought about writing a book about your experiences working through all of the challenges? It seems like there is more to this story than this short video. I’d love to read it. It seems like the rock solid love Beth has helped a lot. It is a lot to deal with and a lot of people don’t know how to deal with the emotions and all of the hard work it takes. I always wonder why some people get these things and if there was mold in the building Chuck was working in. We can’t know everything and I’m so glad the clinical study worked. My brother was able to find a not approved drug to help him recover from stage 4 small cell cancer. I’m glad it worked out for you guys. ❤

What a wonderful supportive and loving family. Wishing you all the best x

Bless you and may your dreams come true

I'm a 44 year old female. My headaches began at age 9. A few months ago, a friend stopped by to give me a bottle of Pedialyte. I drank the entire bottle (1 liter?) and went to sleep. I woke up 2 hours later feeling like a million bucks. But I don't have a million bucks available to buy all the Pedialyte that I need. Instead, I spent a couple bucks each on a 1 lb bag of Potassium Chloride , a 6 month supply of Zinc tablets, and a huge box of store-brand drink mix packets in various flavors. No more headaches for me.

Anyone know how to get tested for the MM gene? What is the test called? My dad passed away from MM 5 years after diagnosis at age 68. He kept telling me to get tested to see if I have the gene for it, but I was afraid. I am willing to get tested for it now.

Michael Landon died from this same type of cancer in 1992; or at least it was dealing with the bile duct. In 92, this type of cancer was something unheard of, at least that I know or found when I researched it.

I am just starting on the journey... My new doctor is actually sending me for tests even though he does not think it could be Cushing's because I am not diabetic. I have weight gain, hump, moon face, high blood pressure, stretch marks, insomnia, fatigue, anxiety that makes no sense... but I am not diabetic so it's not that. We will see... I am doing the dex suppression next week.

Beautiful story, beautiful couple! Very inspiring! I noticed that this man’s identity was in his work and that was taken from him. Then he put his identity in his wife who could die before he does. The only way to have a secure and indestructible identity is to trust in and identify with the beloved Jesus Christ who died for us all and lives forevermore. When you trust in Him, your identity is forever secure because He died once to join us with Himself and will never die again. Hallelujah!

My mom had this I’m currently experiencing is pain in ribs and back shoulder blade legs groin pelvic bone pain Should I get checked for this Sternum hurts too low back ankle I’m a mess 64 years old female

Any update about him 😢

How were her symptoms and conditions not detected/ a red flag/ questioned during her entrance physical for the Air Force? With the rigors of training, and during her service someone should have noticed that she has a serious medical problem, and that something with her health is not normal for a young woman.

Yesterday my doctor called me to inform my biopsy result.the result I had a bile duck cancer.now I’m so sad and stressed 😥

Story touches me a lot. As a Virginia born child and post BMT transplant survivor here in NW/NE Ohio, I am proud of your journey. Stay healthy

I hope she demanded child support or the bio father paid child support. How dare he not be there for his disability child or his family not help