WE MUST CAMPAIGN

[RAJA_]

I am age 33 had bechets from a tennager, and it has completely ruined my life in every aspect from living a normal daily life to raising my children, I feel like there has to be more resources out there to get this for what we are having to deal with, not only do we suffer but our poor children watch us, it effects them hugely , I have been in and out of hospital for years and tried everything, nothing seems to work, maybe we need to work more to get this out there? Not even may of the doctors I meet are aware of this like, the word needs to be spread we need a cure or something to solid we can depend on when severely suffering , it’s a blindsided disease to have and only us who deal with it I feel can really fight for our rights, Behçet’s is agonising and destroying peoples mental and physical states! We. Can’t go on like this , I’ve been up and down hospital 5 days + this week the rest are uncountable 😭 HELP. . Leta do some about this. !! Stay strong guys! Easier sed than done but WE can make changes TOGETHER be it small or big, my son is 8rs old and had to call the ambulance for me late last night , I suffer really bad with ulcers (unable to speak) and joint pain , this nog just effects us but our families :))) my child worried about leaving for school asking me if i will be safe alone 😢 so worrying. I had my first child at 15 and now at 18 he shows symptoms I hate to watch anyone in pain let alone mine without the right answers! let him I am age 33 had bechets from a tennager, and it has completely ruined my life in every aspect from living a normal daily life to raising my children, I feel like there has to be more resources out there to get this for what we are having to deal with, not only do we suffer but our poor children watch us, it effects them hugely , I have been in and out of hospital for years and tried everything, nothing seems to work, maybe we need to work more to get this out there? Not even may of the doctors I meet are aware of this like, the word needs to be spread we need a cure or something to solid we can depend on when severely suffering , it’s a blindsided disease to have and only us who deal with it I feel can really fight for our rights, Behçet’s is agonising and destroying peoples mental and physical states! We. Can’t go on like this , I’ve been up and down hospital 5 days + this week the rest are uncountable 😭 HELP. . Leta do some about this. !! Stay strong guys! Easier sed than done but WE can make changes TOGETHER be it small or big, my son is 8rs old and had to call the ambulance for me late last night , I suffer really bad with ulcers (unable to speak) and joint pain , this does not just effects us but our families :))) my child worried about leaving for school asking me if im safe 😢

So glad I found this forum , thankyouuu 😇 H3LP🫂 stay strong xx

[BigSail]

it’s hard. Life is hard. But I truly believe that you are strong and kind person because you are fighting this and raising a beautiful kids. There is love and care for you, and for all of us. The beauty of life is hidden in hard times.

Keep your head up champion. You are a warrior.

I just posted something like this in Reddit yesterday, and now i see your post. Check the last post that i just published here. I’m really positive about the situation but i think we need to help the process to be faster.

[Tibz]

Heyy hope your well.. I really truly feel your pain 😞 I feel the same it has killed me aswell.I had it at a young age and I'm struggling 😪 it's so sad 😞 it really affects us both mentally and physically..

I keep having these episodes and it's really sad because nobody understands Insha'Allah I hope you get better soon I feel your pain.

[RAJA_ in reply to Tibz]

Tibz, I pray you stay strong and find strength to get through this! All of us can and shall together, you are not alone I am here anytime you need gentle reminder of your purpose., and to chat, it’s not easy for others to understand not even family at times but we must come together and support eachother! #BehcetsWontWin. 🙏🏾 #PainThatDrivesMeInsane 🥺

[Tibz in reply to RAJA_]

Insha'Allah it's hard each days 😪 😔 😞 I can't actually deal with it mines ulcers all over my body sad 😞 😢 nobody understands everyday Is a struggle tbh foot pain cant walk can't function everything hurtz I don't seem to be getting better 😢 all I seem to do I've had enough tbh just feel like this aint gone stop I don't have the strength or energy to carry on living my life like this .

[RAJA_ in reply to Tibz]

:(! You are not alone, I have felt absolutely drained this week in and out of hospital as my mouth was absolutely jam packed with ulcers, I could not even manage to get water down and had to be put on a drip. It is absolutely traumatising, the only thing that helps me is the steroids but as we know they are not good long time, I have been going to the Behçet’s clinic for years now, they have just introduced me to a new medication golimumab which I will be starting from tomorrow apparently they have had plenty of good feedback to say it helps. I am praying to for this really works for me I am at the point of really giving up . Please continue to stay strong and remind yourself of you are a true warrior! We all are tibz! It saddens me to hear your struggles but at the same time comforts me to know as i know you truly understand, that alone is enough for you to appreciate how much of a great person on this earth you are! I got you anytime :))) and maybe mention the medication to your doctor GOLIMUMAB! Tk

[Tibz in reply to RAJA_]

Hey yh its hard and a struggle I'm getting erythema nodosum on my legs now.So yh I don't even know what else to say tbh.

I'm on a new drug .. were yiu got to inject yourself..

Which I'm not sure if I am able to do do or not.

I'm just fed up tbh .

So fedup I duno I can't live like this anymore tbh my whole body aches tbh .

Thanks hopefully all goes well x

[RAJA_ in reply to Tibz]

Yes I have had this one before but did not do much for me, but as we know each person can respond differently fingers crossed it helps , the will assist you with how to do it beforehand you will be fined just try and keep anxiety to a minimum and remember nothing could be worse than the pain and suffering you are dealing with atm. You will be just fine ! I promise xxx

If not onto the next until we get you healed as much as possible !

It’s an absolute killer why me I always ask why me! I guess god knows his plans keep striving. Please keep me updated xx

[Harleigh]

can I suggest I have bechets disease I would like you to try Tahitian noni juice a man from Madagascar suggested this to me I have been more or less symptom free for one year I swear on the holy Bible I believe that this juice has helped me and is the reason why you’ve got nothing to lose I thought exactly the same as you when you was reading my post please come back to me and I will help you resource.

[RAJA_ in reply to Harleigh]

Appreciated, will definitely look into it and keep you updated, i plan to venture out talk and document stories of real life Behçet’s sufferers to raise awareness and recognition , please let me know if it’s something you would be interested in participating.