Behecet's society

[Maureensundborg]

Hi my son lee has had behcet's syndrom from the age of 18.an im sad to say he passed away on the 13 oct from the syndrome.but now i have noticed some sites are calling it a desease.this is an unnown terrible syndrome.we as a family have put a funding page up in the name of my son lee pearcey he was only 29.not enought reserch is put into this rare desease or syndrome.please share this page.my son was english we have no idear where it come from.thank u for readi g this .my heart goes out to any o e suffering from this awfull desease my heart is breacking but needed to share.thank u.his mum mem xxx

[belle623]

Maureen

I am so sorry for your loss. Thank you with all my heart for speaking out and standing up up for BD. I cannot imagine your pain and loss. Pls know you and your family are in my prayers. I wish you peace. Keep speaking

Hugs

Ash

[sam0511]

Mine and my family's thoughts are with you and all your family. I appreciate your bravery in posting your message. I had behcets confirmed earlier this year. I am a 49 year old female and have been suffering symptoms for at least 12 years. When you feel strong enough, please post again and talk about your son. x

[Haksta]

Maureen we are all so terribly sorry to hear the loss of your son. My thoughts and prayers are with you and all of your family. I wish you find peace in knowing that his suffering is now over and he is ultimately in a better place now. As a 31 year old male sufferer since 14 I can say slowly but surely behcets has ruined my life, I lost vision in my left eye recently and really it's rapid progression is scary beyond words. The Yazici Turkish doctors say it is worse in young males and I believe this is true since I'm also having heart issues and it is becoming ever more painfully complicated. I know it's extremely hard to talk about for you and really appreciate your bravery in reaching out to other sufferers, trying to help us with this horrible disease / syndrome. Thank you and If any time you feel you're able & you'd like to share more about your son and his complications please do so as it would be very informative for all of us here.

I cannot imagine your pain and loss there are simply no words it is the worst thing in the world. x

Reply

[xandii]

Dear Maureen,

My heart breaks for you and the very sad loss of such a young man. As your son you will have been by his side through all the trauma and twists and turns that Behcets does to us and to share this moment of such sadness and sorrow with us is just so much appreciated. He was your son and nothing prepares us for the loss of one of our children so please know we are all thinking of you at this time and we share in your grief as he was also a member of our very exclusive family too !

I know many of this group will join me to wish you well and hope that in time, the pain and sorrow will ease a little and perhaps you can share with us some more details of his life and how he coped with all the problems he had to face ?

Until then, please know that we are thinking of you and your family and send all our condolences to you in this very, very sad time.

Take care and know that all of our thoughts are with you.

Kindest regards,

Xandii

XXx

[Bridy]

I am so sorry for your loss as a parent I can only imagine the pain and loss you are going through my thoughts and prayers are with you and your family 🙏

I was eventually diagnosed with Betchets Disease last year at the age of 56yrs after years of suffering I have suffered a stroke 2 heart attacks I've been diagnosed with vasculitus arthritis uveitis I have terrible ulcers in my eyes I was put on Athropine but it damaged my liver so now I'm on another new drug which has caused me to have phumonia the mouth ulcers and gential ulcers are unbearable at times the constant headaches have you at breaking point to say the least this disease is horrendous and yet it isn't really recognised as such not a lot of people realise how bad it is or what it is I truly think that more should be done so people can understand it properly x

[billi]

I am so so sorry for the pain you must be going through with the loss of your son. This is a terrible disease and we do need more research and understanding of the many symptoms. At least your son is no longer in pain but still I'm sure you are already missing him so much.

I think the funding page is a very good idea. God bless you and your family at this time.

Billi

[AmandaMoseley]

My dearest Maureen

I am so sorry that you have joined the band of those of us who have lost their children to Behcets - my Ruth was just 18.

I wish I oculd tell you that time heals the pain - but that is not true - it simply dull sit and makes it easier to bear - especially if you always remember him with laughter and love.

If you would like to talk then please message me at any time

Amanda

[sian35]

Dear Maureen,

I am so very sorry to hear about your son. I can't find the right words to say more but just wanted to let you know that I am thinking of you and your family at this heartbreaking time.

With every kind wish

Sian

[Michja]

Dear Maureen,

With tears in my eyes, I'm sending my love at the sad loss of your beautiful son, Lee. I know this is a heartbreaking time for you as I lost my sister at the age of 18 in a car crash. It takes a long time for the pain to dull but I know Lee is with you, by your side every day. It helped me to remember all the smiles and happy times when you feel low. Having special people in you life that you can talk to is also important.

Both my children have Behcet's disease/syndrome and I fight for their health every day. Please let Behcet's receive funding for intensive research. x

[Hidden]

which funding platform are you on Maureen? is there a link?

[Logan360]

My heart goes out to your family my son is 10 and has it

[Bethb]

Condolences to you and your family. This is terrible news, I'm so sorry to hear of your loss.

Thank you for your message. I hope you keep in touch.

Xx xx

[lesleyg]

Dear Maureen

Words can't express how I feel for you and your loss. I don't think anyone stops being a mother and caring for their children. My 85 year old mother worries all the time about me (and also inquires regularly about anyone she has got to know through the site). As someone mentioned below we are a family that has been brought together by this horrible syndrome or disease. If talking helps feel free to 'vent' as there are plenty of listeners here.

Love Lesley

[mjm1708]

Dear Maureen

My 12 year old son has BD and has had symptoms for many years. Reading your post has brought tears to my eyes and I can only imagine the pain you are dealing with. My thoughts and prayers are with you and your family.

X

[Netsbets2016]

so sorry to hear of the loss of your son, and thank you for sharing. (HUGS) from CT.

[CrystalAngel1]

Dear Maureen, no words I have can take away from your pain but my thoughts and prayers are with you and your family. I'm very keen for there to be a better understanding of Behcets in the UK and thank you for everything you are doing despite your circumstances. I'm one of three siblings all of whom have Behcets. We are Caucasian and have no idea where it came from/ why we all have it. We participate in as much research as possible. My parents find it so hard. I feel for them. They did nothing wrong, yet they question themselves. Cherish your memories of lovely Lee. I'm sad he lost his battle against this and I can only pray that research will prevent more from doing so in the future. Take care of yourself, my thoughts are with you. X

[Nitap]

So sad and sorry for your loss Big Hug xx

[Dawn_Dighton]

I am so sorry for you and the son you lost to this bad bad desease .my heart brake for you and can only imagine how heart broken you are as a mother.i have behecets and have pasted it on to my 6 children.i am so scared what will happen to us all ,and that I might lose one or more of my children to this.Im 42 so I have been lucky to live with this .im living in a night mare and I pray every day so that I have the strength to help my children.God bless you,I wish and I pray things will get better for this terrible disease ,it is so sad and shameful that we don't get the meds and help we all need.my heart is breaking and I know your is broken.my thoughts are with you.

[Hurnadoquake]

I'm so sorry to hear he passed. This was the young man on 24 hours A&E right? I was looking to see how he is hoping for a life without pain. I'm so sorry to hear he's gone but I'm guessing knowing he's out of pain is a relief even if that means he's not here. I understand a little. I was diagnosed with a different disease in 2022. It's turned my whole world upside down. The wheelchair is manageable. The loss of a purpose and the pain is not. I get what he meant by that. You're living this life full of all kinds of joy and normalcy. Then suddenly your life is doctors, swallowing handfuls of pills, and relying on others for the most basic things. It's hard. I never knew Behcets could do something like that. I never knew neurosarcoidosis could destroy me inside out either though. One thing I will say is the entire village I thought I had disappeared so quick once I wasn't fun and useful anymore. My family was never there for me. I thought I healed from that. Until I got sick and needed them but nobody came. That's one thing you can hold dear. You were there for Lee. He was never truly alone and I'll tell you as someone suffering every day that means so much to open your eyes and see familiar faces. Hold that close. It mattered. It mattered a lot.