Has anyone been diagnosed with Buerger's Disease? ( Thromboangiitis Obliterans )

[Suzym2u]

There seems to be very little info on the prevalence of this disease. Please send us a private message if you would like to share your experience, or write to John. [e-mail]

[PMRpro]

At a guess because it is becoming far less common and the rates vary greatly according to ethnic origin. There are old figures to be found for some regions. Anecdotally:

"Buerger's is more common among men than women. It is more common in Japan, India, and Manipur along the "old silk route" than in the United States and Europe. The disease is most common among South Asians. Incidence of thromboangiitis obliterans is 8 to 12 per 100,000 adults in the United States (0.75% of all patients with peripheral vascular disease)."

In countries where use of tobacco is falling, so will the rate of Buerger's disease. I don't know what the situation is now, but at one time in the UK you could not say smoking was the cause of Buerger's disease - it may not be, but it is only a real problem in smokers who do not stop smoking. Stop smoking, and the progression of the disease stops, start again and it progresses.

[piglette]

I knew someone a while back who had it, he was told it was caused by smoking. I don't know if that is true ir not.

[PMRpro in reply to piglette]

The jury is still out on whether it is actually CAUSED by smoking. What is absolutely certain is that if you develop it and continue to smoke it will progress - it leads to finger and toes simply shriveling and dropping off. Stop smoking and it will stop. Smoke again - and it carries on.

When my husband ran a vascular lab they had a few patients with it. Once they took a sock off a patient to do some tests - a toe was lying inside it. There was one patient who was hospitalised because the gangrene it causes was progressing. All fingers were gone and only the bottom joint of the thumb was left. The fag was held between that and the palm. But give up smoking? No way.

[ldwilliams]

I was diagnosed 2 years ago now with Buergers Disease.

Very luckily I had stopped smoking 3 months before before diagnosed.

Those below the age of 50 tend to suffer more from the ulcers and amputations if it progreses

Also just about every article online states that smoking does cause or is contributory to Buergers.

So far I have had no ulcers or amputations, nor likely to i hope! But I Do suffer greatly with numb and freezing feet and hands

There is a forum that is about as active as any others, well more so then any other that I have managed to find, it is

mdjunction.com/buerger-disease

I hope this helps. You are welcome to msg me if you want

[Suzym2u Moderator Vasculitis UK in reply to ldwilliams]

thank you for this Idwillims Someone has contacted us regarding research on a new drug for treating Buergers I will pass the info onto them. I will tell you more when I know more.

BW

Susan

[Suzym2u Moderator Vasculitis UK]

Thank you for all the replies, they have been very helpful. We have been contacted by someone regarding research on a new drug for treating Buergers.

Susan

[Tincantat]

I was diagnosed in 2010 and had amputation finger tip due to blunt trauma and osteomyelitis in 2015 and gangrenous ulcer to toe in Jan 2016 due to 2 blocked arteries to foot which required recent below knee amputation. 11 days ago. I am female 44 and gave up smoking 5 years ago and the only female treated with condition by my vascular Consultant.

[Suzym2u Moderator Vasculitis UK in reply to Tincantat]

How are you doing now ? Hope you are doing ok? Are you in this country in the UK?

[Kay60moxie in reply to Tincantat]

Hi tincantat, I am a 57 year old female who was diagnosed with Berger's 5 months ago. I am having my second encounter with this horrible disease. My toes are gangrenous.. I was in hospital for 5 days and now home waiting for demarcation line and to see which toes will fall off or be amputated. The pain is unbearable. I quit smoking 13 days ago. I got really depressed when I read you quit smoking 5 years ago and you are still having amputations. I was hoping when you quit smoking that the disease would go into remission or at least slow down. It is so hard to get pain meds also. Do you have a problem with this.

[Kay60moxie]

Hi, I was diagnosed with Beurger's Disease 5months ago. I do not know if this is still active as every message is 3 years old or more. I would love to talk about this to someone. Please answer me if you are still on this site.Thank you.