Behecet's society: Hi my son lee has had behcet... - Behçet's UK

Behçet's UK

5,208 members4,317 posts

Behecet's society

Maureensundborg profile image
18 Replies

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

Written by
Maureensundborg profile image
Maureensundborg
To view profiles and participate in discussions please or .
18 Replies
belle623 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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

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

Logan360 profile image
Logan360

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

Bethb profile image
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 profile image
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 profile image
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 profile image
Netsbets2016

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

CrystalAngel1 profile image
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 profile image
Nitap

So sad and sorry for your loss Big Hug xx

Dawn_Dighton profile image
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.

You may also like...

Can anyone tell me how I can donate my body to the Behcets Society/foundation when I die?

person on the Behcets e-mail address about this subject but never got an answer. Could someone put...

POTS? Is it possible...

few spikes in my heart rate. One scary episode involved an early morning jump from 60 to 160. I was...

Is it really Behcets if you don't have ALL symptoms?

My 15 year old son has just been told he has behcets - he doesn't have the eye sores or anal sores -

Looking for tools to help my teen cope

here. I'm looking for resources that could help my son cope with BD. He'll be 17 soon. He was...

Bechet's 9 years old son

Hi everyone we are new ..my son Willdrich is 9 and be diagnosed with Bechet's. He started his...