Видео

Thanks Jillian for sharing your story. I was diagnosed with AS on December of 2020. I started feeling this excrutiating pain about 8 years ago. I stopped sleeping on a regular mattress bed, and limited my traveling in a vehicle to only necessary trips. I moved to Baltimore from Puerto Rico on January 2021 seeking medical advise at Johns Hopkins. I moved as close to work and I now bike everyday on an ebike. Biking and using FeetUp has helped tremendously. On May 2024 I got into a road accident and fractured my right hand and wrist. It was during this medical leave that I started pursuing medical help. I was referred to a Rheumatologist too. I carry a CushionLab seat cushion everywhere I go. At work, I'm the only one with a standing desk. However, since being at home for the past 5 months, the pain has increased to the point of crippling me. My advice to you all with this condition is, always move, whether that be yoga, FeetUp, walking and/or biking. Avoid any kind of traveling by car or train. I know, it sucks, but this is how we can tame the Beast of Ankylosing Spondilitis. Be strict about your diet. Drink quality green, black and hibiscus teas. I buy mine from Davidson's on Amazon. Have a balanced diet, do juicing /smoothies, and drink the juice with the fiber and all. Every morning a prepare a 30 oz smoothie with baby spinach, frozen baby carrots, frozen ginger, frozen red beets, papaya, a 1/8th lime or lemon, frozen apples, frozen watermelon. Do stay away from ultra-processed foods, sodas of any kind, no sugar, limit eating pastas, white rice, and forget about eating fast-foods. Wish you all the Best and see you all at the peak of the mountain!

How much does Humira per injection cost in the US?

I have pain in low back, hip, knee, neck,shoulder, rib, finger joints with a pop and crackling sound. I have herniated disc but SI and Hip joints appeared normal in MRl. All blood tests including HLA B27 are negative. I don't know from what disease am i suffering from! I am getting different views from different doctors that I might have, seronegative arthritis, osteoarthritis, fibromyalgia, etc. It has been 6 years now, still I don't know from what disease am i suffering from.. this pain is very frustrating.

Hi! Thanks for story! Did you start taking Humira immediately after the diagnosis? In my country, 1 step - NSAIDs, 2 - DMARDs, and 3 - biologics. Assign 3 only if 1 and 2 didnt help.

wow. saw your spondy story. then this. incredible.

I’m going through the same thing as you right now the pain is awful

Thanks for sharing your story. A few years ago I was told I had AS, it was a relief to finally put a name on the pain. I'm HLA B27 positive and mri showed chronic sacroilitis. My blood tests always came back good. A few days ago, plot twist, I'm told by another rheumatologist that I dont have AS because my mri is now fine. My mri does not show anything anymore. But when I ask what explains my pain, he doesn’t know. I feel that I'm back to square one trying to figure out what's wrong with me however I read the comments and it seems like a lot of people have "clean" mri and blood tests but are still told they have AS. Best wishes to everyone dealing with this!

Just diagnosed with SLE few days ago I'm 34 and just so scared. Thank you for sharing! ❤❤❤

Hi, great to hear your story, wish you the very best. I was diagnosed with AS 6 months ago and started the treatment with Humira 1 month ago. I feel much better for sure, but I still think it can get better. How many shots did you take until you felt like it was in another level of painless?

🔥🔥🔥

Powerful beauty~💃

Hi, I am from India. I was diagnosed with Ankylosing Spondylitis at 18. Resonated so much with your story. More power to you and everyone suffering from this disease.

Thanks alot for sharing your story , I was diagnosed with RA , FA , Degenerative Joint Disease , Sciatica and Osteoarthritis 11 years ago at the age of 40 and my life changed drastically. A very good Dr. told me I had AS at the age of 34 after going to him repeatedly for back pain and spasms. Knowing this I asked all of the Specialists that I had to see and they wouldn't test me for it simply because they were going off of the symptoms of the RA , causing me to suffer more without treatment and I went to a new Rheumatologist andI didn't even have to ask her to test me for she automatically did after my examination and my results came back , and she quoted " I have diagnosed you with AS " The biggest relief came to me because with this I could finally start getting treatment!! Still rough because of the damage that occurred from no treatment all of the years being present. I still haven't found the right med to relieve it enough yet but pray that I do soon. But due to the noncaring doctors that were supposed to be finding every problem and treating them , thanks to them it's going to take surgery to fix 4 bulging disc in my lower back which occurred from deterioration of the cartilage as a result of not getting inflammation meds. I made many trips out of town to Specialists, and the only diagnosis they focused on was the RA and told me that there was nothing they could do for the RA . 😢 I f your Dr. is too busy to listen to you and is continuously trying to rush you out of office , don't waste anymore of your time nor another visit , find you another Dr. , we can't afford to waste time , these diseases are steadily causing deterioration which is damaging causing us more pain and suffering 😢 So listening to stories from people going through the same thing you are does help , it let's us know we're not the only ones going through this nightmare and we might learn something from each other that might help , I'm sorry that my comment was a chapter but once I started I couldn't stop , needed to share my story with people that truly understands our lives living with these diseases. I pray that all of us gets relief ❤

There is a cure found for AS which is currently in clinical trial in Russia You should search for this : Targeted depletion of TRBV9+ T cells as immunotherapy in a patient with ankylosing spondylitis | Nature Medicin

Thank you for sharing your story.

Took 5yrs for my diagnosis 😢

Hi Jillian, what a beautiful competition! I saw your video about ankylosing spondylitis you did 3 years ago and I wanted to ask you how has the illness been and what you found helpful in fighting this. Thank you very much

Does your allergic reaction from injection consist of the skin swelling kinda like a golf ball and hard

Have had AS. Since age 16 finally got diagnosed at 36 hip replacement surgery at 38 and again 56 same side been on biological therapy for last 14 years and not working as good nowadays now on a new medication Rinvok not convinced yet ❤

I had a similar story to yours. I always thought it was a men’s primary disease . I told my rheumatologist that my son has higher chance of getting the disease but my new rheumatologist told me that new studies are showing that more and more woman are being diagnosed with AS and that it is not true that males are more prevalent.

I know this is old but I had to leave a comment anyway. I was diagnosed at 53 but started struggling with my lumbar spine and various ligaments at 18. I also danced: jazz and as an adult, I've played around with different Ballroom types. I had my first spine surgery at 33 and my second at 35. Slowly, over the years, dance has been taken from me. Like someone else here said, I'm glad you found out early so that treatment will hopefully keep you moving for many years to come. #spondysisters

I was also diagnosed with AS about 2 years ago. Happ to hear that Humira has worked for you. I have not been so lucky. I do an injection every 7 days, and usually by about day 4 I'm in pretty terrible pain again. I was also pretty advanced by the time I was diagnosed though, so I have been unable to work since the time of my diagnosis.

How have you been doing? Any updates? I was just diagnosed with AS and I'm inspired by your dancing videos!

Sorry I couldn’t make it!

Thank you for finally posting!!!!!!!!!!

Thank you for sharing. I have been struggling to get a diagnosis for 5 years. The pain and discomfort have taken a toll on me. AS is difficult to pin point. I was told AS is what I have.

Wow two studios at the same dance Competition

How long did you have to stay there?

Jillian I am in your leaps and turns class every Thursday and we all agreed that cosmic brownies are better!!!!!!!!!!!

That was so funny how Jillian said headlight instead of head level

You did a very nice job jillian! YOU HAVE TO VLOG MORE!!!!!!

The alligator you saw on the boat and you said you would name it purl. I would name it Timmy

anyone on xeljanz for it instead of humira?

Get the book: "No Grain, No Pain" by Dr. Peter Osborne. Game changer! Best of health to all.

Thanks for sharing you story. I was diagnosed in 2019 but for a long time my pain was dismissed and the numerous specialists did not seem to believe me. The rheumatologist finally took about 1/2 a year to diagnose me but I deteriorated so fast that I ended up needing a care giver and in a wheelchair. The Humira worked wonders but I suffered damage that could not be undone but I am better than my worst condition. I am military veteran but when I spoke of my symptoms, pre-diagnosis, the doctor basically called me a “wimp” with low pain tolerance. In reality, the pain was so severe that I wanted to the euthanized.

Thank you for sharing your story, I am dating a wonderful woman who was diagnosed with AS a few years ago and before meeting her I didn’t even know what this disease was, but hearing your story help me so much to understand the gravity of the situation. I hope we can find the HUMERA medication accessible to her. Thank you for sharing 😊😊😊

Stand strong you all. ❤

In the South, most Blacks are ~25% Europeans. The doctors don’t consider AS due to our phenotype (outside appearance) when they are supposed to have at least a little knowledge of the genetics of the populations they serve. Here, if you aren’t brave enough to stand up to the doctors who look down on you and TELL them what to test, by the time they find out you have AS, you bones are already fused and destroyed. They don’t even know how to read X-rays down here. I had to show the doctor my X-rays on my cell phone with the fusions circled. 😂 My sister is afraid to ask her doctors directly. She said they try to send her to Psych. She in a Police Captain (who mainly investigates Sex Crimes). She is way more stable in the mind than them yet they look down on her and provide substandard care. This is just for your viewers to see. I’m not in any way holding this against you. DO NOT listen to phenotypes (looks) comments from the doctor. It only takes one generation to change a family from white looking to black, to Hispanic, to Asian, etc. it’s also been proved there is 50/50 penetrance between males and females. Only about 2-5% have the genetic marker. FYI.

ruclips.net/video/CV9KHSxvAAk/видео.htmlsi=V0JLt2aLoFPAzWsT

Humera is an immune suppressant, look that up. You need your immune system to stop cancers and a whole host of other stuff. My daughter has been diagnosed with AS and being a researcher in natural health, which is a hobby, I like to find out things that ‘they’ don’t want us to know, I have found the natural cure for AS. I will post this in a separate video, watch it to the end. Good luck guys. Here you go: ruclips.net/video/CV9KHSxvAAk/видео.htmlsi=V0JLt2aLoFPAzWsT

Mmmm, tasty.

Nice dance performance

I’m a former competitive dancer (now medical school professor) and third generation AS sufferer. It’s a tough world for people with this condition. Sending love.

I got diagnosed a week ago, as per my xrays, they show the actual bone spurs waiting for the hlb27 gene results but it's better as i thought i was going mad. People do not care to understand what we go through, absolute torment. I will tell my doctor about the injection.

I wanna do dance so bad but im not sure if i can plus ill fell wierd i feel like i would be in a class full of small kids and be the only hs freshman in there...

I don't believe you kid, until you show how are you WALKING. Picture is worth 1000 of words. 20 minutes of yucking is just to make views for your channel.

You doing lots of harm to people who are suffering of AS. Instead of sitting and yucking, demonstrate how are you WALKING.

40 years of Ankylosing spondylitis, and trust me, I've tried everything, but the Carnivore diet is the only thing that works. Good luck.

LOVE THE MOOSE BACKPACK!!!!!

I think Sydney won the eyeball contest.👁️