Hidradenitis Suppurativa pus and blood.
January 20th, 2016 at 18:37
My heart just breaks for you. This seems like such a painful and debilitating disease to deal with. Thanks for being so brave and spreading awareness for HS.
January 20th, 2016 at 18:42
Thank you very much.
January 26th, 2016 at 09:43
I dont have this disease, but my heart goes out to you and anyone who suffers from it! I have hypothyroidism and PCOS and it seems some women who have pcos have this too. The human body is a mystery. Im curious as to what might trigger your flare ups. Have you ever tried cutting out animal products or gluten? Do you have a facebook page? I’d like to help.spread awareness. I might not receive the response here, my email is email@example.com
God bless you!!!
January 26th, 2016 at 11:30
Hello. Thank you so much. Yes I tried Paleo. HS is not food triggered is an immune disorder.
January 31st, 2016 at 22:24
Please research Dr. Hazen, located in Westlake, OH. He is one of two specialists that perform CO2 procedure. I have suffered HS for 18 years. I now have so much more. Psoriatc Arthritis , Psorias, and tested positive for the HLlA-B27 gene. I also have had Endometriosis and PCOS since 17, now 47. I have an appointment in February, 2016 and so excited. Scheduled appointment last fall.
January 31st, 2016 at 23:35
Hello I’m very familiar with him actually. I don’t have the money off proper insurance to see him. I wish.
February 1st, 2016 at 00:07
I didn’t think I did either. Did you check with his office? Where are you located? The other specialist is located in Michigan. He has a very informative video on YouTube. It’s amazing what works for some won’t work for others.
I wish you luck in finding relief.
February 1st, 2016 at 00:12
Yes I’m positive my insurance only works in Arizona where I’m located. I moved here to be by mayo clinic from Chicago 14 years ago. Plus travel for me it’s not possible. I live on fixed income. I literally never have extra cash. My Dr. Went to school with your guy that’s how I heard of him. Your very lucky to have that option.
February 1st, 2016 at 00:49
What a small world. I am originally from Arizona. My sister works for Mayo Clinic. May I ask a few questions? Are you on the state health? That’s a bear to get through if so, but I would be happy to do some research for you. I am waiting to get on Humira but cannot seem to be off antibiotics, etc. .
I spoke to a pharmacy specialty company and this medication is super expensive. I hope to have some information for you. I wonder if your doctor would speak to Dr. Hamen. He travels a LOT from what I heard. His assistant is the President of my companiy, sister in law. Crazy how I don’t want to be in the Cleveland area, yet I have been blessed with so many amazing doctors. Let me know if there is anything I can help you research. You have a severe case and needs addressed immediately.
February 1st, 2016 at 00:54
I’m on Medicare my secondary is Cigna. I went to Chicago got sick when I was there no one would take my insurance had to pay all out of pocket. Just to get them to let me go to mayo I need to be in bad shape. I am on humira now finally just started. One good thing I get humira 8 dollars a month. Without insurance outs 50 grand a year for treatment lol. I should say I have it in my hand my first injections will be the 9th. I’m excited to start.
February 1st, 2016 at 01:00
Well that’s great that your getting on Humira. How funny it is to be so excited to get injections. Are you getting 3 a month? Are you administering yourself? I am so scared to do such. I think the doctor will do so. I hear you on the cost. Absolutely insane. And that is a lifetime prescription. I wish you GREAT results. I hope to have my injections start soon. First month will cost me $5.00 and then zero out of pocket rest of year for any medical as long as I stay in network, due to the cost of Humira. A huge positive as last year was athe least $40k, 4 surgeries etc, etc, etc. Enjoy AZ. Miss home very much.
Keep me posted! Best wishes!!!!!!
February 1st, 2016 at 01:04
Hey if you can can you contact me here I’d like to keep in touch. https://www.facebook.com/hshelpnow/ that’s why I have to wait until the 9th my Dr. Has to give me the first one. But I’m ok going to myself I take four insulin shots a day.
February 4th, 2016 at 03:14
I am 31 years old and suffer from this as well. I have had them removed (which was so painful it was worse then having children) and they do not seem to be able to diagnose me which is super frustrating but from what I can see above, I deal with this on a regular basis and it is so embarrassing and painful to say the least. I am tired of being on antibiotics but that is the only medicine that will calm it down for a few. It’s really bad and I pray yours gets better sooner than later.
February 8th, 2016 at 20:30
You’re a strong man ! I can see the pain in your eyes, yet you fight to create awareness for hs. And I’m pretty sure you don’t do it just for yourself. I’m fighting the same battle, same pain, same medication, Same idiots that think it’s just a rash or some pimples. I have the best dermatologist in my country and she doesn’t know what to do anymore. We tried it all. Humira, remicade (which gave me an allergic reaction the second time they gave it), antibiotics, surgery, no luck. It got me down, but you’re still fighting for the cure. Thank you for that !!!!! Stay strong
February 28th, 2016 at 04:47
Hey there, I’ve been bed ridden with the disease after surgeries(s). Two surgeries were enough for me, one helped, the other didn’t heal. I’ve found that flare ups and inflammation / infection can be remedied with toothpaste( the normal white type). I put a bandage on, rub a small amount of toothpaste into the area that is infected. It instantly soothes, and it purges the entire cavity of pus / infection after half a day (unfortunately it can create more inflammation after awhile too). They have been able to heal after this purge (VERY MESSY), providing temporary relief (It’s not a cure, but its the cheapest, and most effective thing I’ve come across . It was recommended by a surgeon in my family.) Anyway, I understand your issues you face, you’re definitely not alone.
March 3rd, 2016 at 02:31
I just want to say that you’re incredibly brave and strong to share your struggles like this and by doing so you’re really making a difference!
I just found you on Youtube and I’ve never heard of this disease before so thank you for sharing! I feel so deeply for you and everyone else who suffers with this horrible disease. I wish that there would be a cure for it. 😦
What really got me was your post about you feeling so lonely and that you’re depressed…
I hope that you can feel that you’re not alone, that tons of people are thinking about you. I really wish you the best and that you can find love, wether it’s from friends, family or a partner.
Obviously I dont have HS but I do suffer with depression and I know that hopeless feeling it brings… Try to stay as positive as you can, you’re such an inspiration!
(Sorry if my spelling is crazy, I’m from Sweden)
Best wishes// Elin
March 3rd, 2016 at 02:38
Thank you so much for the kind words. It truly means allot to me.
April 5th, 2016 at 10:32
I do not have this disease but I can’t imagine living your life. I am a Radiation Therapist and know what skin metastasis look and feel like and can only compare it to that. I can’t believe how collected you are under the circumstances, I feel for you. I am liking you page in Facebook, thank you for educating people. Have a pain free day.
April 16th, 2016 at 06:28
God bless you, and may He give you strength and comfort. Your videos made me tear up. Because seeing someone who truly understand what we go through and being so supportive and strong about it is so admiring. Keep your head up, I wish I could give you a hug. Because that really is what we need sometimes. To know someone cares and understands. You’re a blessing and God put you here for a reason. To help others and educate people about this disease. Thank you for all you do, and I pray for your continued strength and one day, Godwilling, a cure for us. Take care and God bless. Again, thank you.
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