i have takayasus and need some answers

Heart health and blood vessels
1

hi i was diagnosed with takayasus ateritis in july 2008 at age 19, i feel really alone as i was told this disease is so rare. i wolud like to talk to other suffers and here there experience and offer support.

email me fmunton@****** or post me a message. thanks

(Sorry but Patient Admin have removed either a telephone number, an email address, and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)

2

i was diagnosed whith takayasu arteritis ion 17 december 2008 im 60

im taking prednisol

3

Hi ,

I was diagnosed with Takayasus when I was 17 years old. I am now 61. Although the disease is very rare, I can tell you that quite a few people do have it. If I can be of any help to you please ask and I'll do my best. Keep smiling

Best Wishes

Rosie x

4

Hi RosieK

My name is sai,33 years of age ,got inflicted with takayasu when I was 17 years old.So far life has been kind.I dont want to be negative , infact my personal growth has been tremendous after the disease like spiritulity,career , attitude towards life.

But mortals as we all are ,I sometimes worry about what will happen in future -today I am young but what will happen when I grow old.

Pls would you be kind enough to share the rich exp you have had over the years.How has your life been .Are you married! Has takayasu impacted your life in anyway.

Best Wishes:D

Sai

5

Hi im jemma i got diagnosed aug 2009 at 19 and i was being told i had growing pains for 2 years when i first found out i had this i was scared..... being told i prob wouldnt have kids is awfull ..... futher test revealed i only have this condition in my legs and since then i have had 2 children so there is hope i try not to worry about further on

6

ohhh and im on azathrioprine

7

Hi Jemma

I was diagnosed with takayasu when I was 16 and now i am 36

what is the current status of your disease i.e is it active or inactive ! What medicines do you take !

Believe me,as long as your disease is diagnosed, docs have given you proper medicines ,you take them as

instructed, take care of your diet ,keep a possitive attitude ,life will be fine.

I completed my graduation ,took up my 1st job and then 2nd and now 3rd ,at a failry senior level.

I live alone in a different country and by god's grace I am able to manage.

Net net what I am trying to say here is that yes we have this dis-ease ,but how much of it do we let control our lives is

in our control. I dont think my life would have been any different w/o takayasu.

No doubt it is something that any of us would have asked for but reality is ,we have it. So accept it .

If it makes you feel any better,it is not that rare. People have it all the time.

You will have a great life ,trust me. Let me know if there is any specific matter/feeling that you would like to discuss and I will answer you gladly.

Take care, eat well and pray.

not sure if my email will be retained here but incase you want to talk privately it is -

Emis Moderator comment: I have removed the email address as we do not publish these. If you wish to contact other users directly please use the Private Messaging facility.

8

i am now on azathrioprine

ive stopped taking prednisol now

i dont know if i might have to go back on to them

9

Hi..

I'm 27 years old and I have that nice disease takaysu in 2010 and i am in 5 degrees .. can i get marries now? who can answer me plz

10

Hi..

I'm 27 years old and I have that nice disease takaysu in 2010 and i am in 5 degrees .. can i get marries now? who can answer me plz