Let’s Talk About Behcets
I’ve gotten some of the nicest letters from people who suffer with Behcets disease or that have family members that do and most of the times the letters say how much I’ve inspired you. The truth is, your letters inspire me more than I could ever explain! Most people have no idea how difficult 2007 was for me dealing with the symptoms of Behcets and not knowing what was happening to me, but I’m happy that the worst is behind me and I’m looking forward to representing all of you that suffer from this disease in the Olympic trials and hopefully the Olympics later this year.
Since most people may not know, I was diagnosed with partial Behcets last year and I suffer from fatigue, terrible mouth ulcers, and skin lesions. I’m lucky because Behcets can be very severe with loss of vision and even lesions on the brain. Its a difficult disease and even though most Americans don’t suffer from it, it’s still something that young kids and the elderly deal with, and I believe that as more people become aware of the disease we will find a cure for it!
I wanted to make this a section specially for other’s that suffer from the illness or anyone who wanted to know more about it.
Thanks for writing and God bless!
Sanya
June 12th, 2008 at 10:20 pm
This was posted was DEBK recently and inspired me to have a section on mysite specially for this…
Thanks for your kind words and best of luck to you and your son
I’m sorry that this comment doesn’t relate to the blog entry, but I couldn’t register at the forum and wanted to leave a note somewhere…
THANK YOU, Sanya, for being such a positive role model. My son is 12 years old and, bless him, he is refusing to let his Behçet’s keep him down. It’s tough, both mentally and physically, as you know, but he keeps bouncing back. You are a HUGE inspiration! Words fail me, but as a mother, I thank you for the hope that you have offered my son.
Please remember that here in Portugal, we’re watching every possible race and praying for you. God bless and keep you always.
June 13th, 2008 at 3:13 am
Hi Sanya. My 12 years old son was diagnosed with Behcet’s at age 3 but was sick since birth. I was also diagnosed about 3 years ago. We live close to Montreal. Andy have a severe Behcet’s and most of his organs are affect. He has now auto-immune hepatitis and Iga nephropathy relate to his Behcet’s. He is also epileptic but he is a fighter like you. You are an inspiration for us.
Love and hugs
Diane, mom of Andy-Gabriel
June 13th, 2008 at 3:46 pm
Hi Sanya
I hadn’t mentioned this before, but my daughter Sarah is 16 and is on the high school track team (relays and hurdles) and cross-country teams. She watches all the televised track events, and when I told her about you, she was thrilled.
You’re such an inspiration to all of us with BD. Best wishes in the upcoming trials, and DEFINITELY in the Olympics !
Hugs, Joanne
June 13th, 2008 at 4:48 pm
Hi Sanya! I can’t tell you how much you inspired me when I heard your story. I had to blog about it (http://tracetalks.blogspot.com/2008/06/perspective.html) because I myself was diagnosed a little over six years ago — just four days before my wedding! At that time I was in that very bad beginning place of Behcet’s, so I can understand where you are coming from. But to be in that place and to be training for the Olympics, wow! You certainly have a lot of courage and strength, in my mind. Thank you for sharing so much of your life and for being such a strong representative of those of us living with this disease. I’m sure you have given a lot of hope to so many around you, be sure that I will be cheering for you when you run!
Many blessings,
-tracey-
June 14th, 2008 at 2:08 am
Hopes, dreams, inspiration, etc. These are words that a person thinks of when reading your story Sanya. Thank you so much for being willing to share your diagnosis with the world. We have been needing someone with some public exposure to be our face to the world.
I am in awe of your special athletic abilities. Good luck with the trials and then The Real Thing. By sharing your story you have just received a whole new rooting section as you run. Think of it as having several thousand new best friends.
Here is wishing you better health.
Ruby
June 23rd, 2008 at 11:49 am
Sanya,
What a great inspiration you are to people and families affected by Behcets. To see you fight through this illness and succeed gives so much hope to other people who are suffering from this disease. My 19 year old daughter has been dealing with behcets for over 4 years now, and has just completed her freshman year of college. A great accomplishment for her with all her health problems. To see you do something that you love encourages others to fight thru this and win! It is about time we have someone who is in the public eye get the word out!
Good luck at the Olympic Trials…we are routing for you!
Penny
June 29th, 2008 at 7:09 pm
What a wonderful story for all of us with Behçet’s to follow this summer! Sanya, I’ve been reading everything I can find about you online and watching clips of your races.
It’s amazing that you have been able to keep up with your dreams despite developing Behçet’s. As you know, even the medications can have disabling side effects, so I’m so happy that you’re having success with your current treatment.
I’ve had Behçet’s for 21 years - slowly progressive and disabling despite many treatment regimes. While there are not many of us Americans with the disease, we welcome you to our “family” and will be cheering you every step of the way this summer!
Hugs and best wishes,
Lisa Jensen
San Diego, CA
June 29th, 2008 at 8:38 pm
Although you went through a tough year last year San, you survived through it all because of your amazing family support and faith in God. I am glad to see that you are healthy and I wish you all the best at trials and Beijing. Bring home the gold so that we can focus on the golden couple’s wedding… another major highlight in your life approaching sooner than you think :-). I am soooooooooooooo proud of you girl. Keep running hard and run for God.
July 3rd, 2008 at 6:14 pm
Thank you for going public about your Behcet’s condition. It is very encouraging for young people to see someone with BD succeed despite the horrendous effects it has on people who suffer from it. We are thrilled to see your name and accomplishmnts publicized and are equally excited to know that you won yourself 1/2 millon dollars based on what you CAN DO.
Good luck for the Olympics trials and games. You are an absolute inspiration for BD folks to keep trying and getting up and fighting back after what can be terrible flares of this illness. THANK YOU! Our daughter is also very accomplished and always takes heart in someone else being SO SUCCESSFUL who fights BD. What a wonderful day it has been to discover you!DONNA DAWSON
July 5th, 2008 at 2:35 pm
Sanya! You made it to Beijing! HURRAH.
Portugal is rejoicing.
God bless,
debk and son, Drex
July 14th, 2008 at 3:00 pm
Hi Sanya — I happened to be reading the Chicago Trib last week and saw an article about you and that you had Behcets. I am 53 years old and have had this illness for over 20 years. I started running when I was 20 years old and began doing triathlons when I was 42. However, my remissions have been getting progessively closer and closer in the last 8 years, and unfortunatley, I haven’t been able to race during the last 2 years. However, I never give up hope and I know I’ll be out there again, whether I’m 60 or 70. You mentioned you were taking a new medicine and it seemed to be helping. I was wondering if you would let us know what the medicine is. I thought I had taken it all but am always looking for new and alternative ways to beat this illness, and continue my triathlon passion. No matter how tough things can get, please don’t ever give up on your dream. I wish you the best of luck in all that you do. I will keep you in my prayers.
July 31st, 2008 at 4:05 pm
I have a 12 yr old girl that was diagnosed with PROBABLE behcets this week, after painful lesions since December. It was awesome for our family to see your article in people magazine and it was just such a hopeful thing to see what she might be able to accomplish because right now she can not even hardly move. She started prednisone today even though i don’t want her on it, but she needs some kind of help and I have something she is going to start taking soon that might help me from getting ulcers in the future.
Hopefully,
GBG’s Mom
August 7th, 2008 at 5:28 pm
I am really thrilled to see you race in the Olympics despite the attack of the Behcets Beast. It would be so helpful to the entire world community of diagnosed and as yet undiagnosed Behcets sufferers if you could publicize more about what symptoms to look for, how to find a doctor, what meds are working for you, etc.
I have had the illness for 26 years and had to wait 4 years for a correct diagnosis. I suffered through high fevers, sores everywhere and horrific oain and exhaustionbut still limped to my jos(s) and smiled. No one knew what I was feeling and no one guessed because I appeared fine. I work out whenever I can and as aggressively as I can but I find that I do get inflammation from the physical workouts and emotional stress cause outbreaks.
Keep going and win for all of us who hold you up as our heroine!!
August 8th, 2008 at 3:10 am
We’ll all be watching you in Beijing !!! Best wishes, and run run run !!!!
All the best,
Joanne
August 11th, 2008 at 12:49 pm
Good Luck in Beijing! We are anxiously anticipating your races!
Penny~
August 16th, 2008 at 5:41 am
Good luck Sanya¡ We are very proud of you. We have a 15 years daugther that also has behcet.
Cheers,
Silvia
August 16th, 2008 at 10:41 am
I have been battling this ugly disease for over 7 years. My heart went out to you when I heard you were diagnosed. I am so proud and inspired by you that you have not let this disease get the best of you. Myself, as well as my entire family will be watching you in Bejing & cheering for you. I think you are so incredible. God Bless You!! I really look forward to meeting you at the Walk in October in NY.
Cathy F.
August 16th, 2008 at 2:26 pm
Sanya
You are inspirational! Please continue to be open about your behcets, its a little known disease in the UK and we need high profile people to be brave and expose it to the world! But it takes courage with some of the symptons…. So I thank you from the bottom of my heart.
I have lived with behcets for 14 years, had my 30th birthday and was diagnosed almost immediately. I think we are a tough bunch and we are very supportive of each other so you are not and will never be alone.
I have the sky box set up to record your events as I am away to my holidays whilst you are competing. So I wish you the best of luck from all of us with behcets in the UK.
August 16th, 2008 at 3:28 pm
Way to go, Sanya! So far… perfect!
Beijinhos,
debk and family
Lisboa, Portugal
August 17th, 2008 at 5:54 pm
You have no idea what you have did for myself and my 11 yr old daughter Thank God you told the world No one ever listened before you. i have been very ill always have ulcers everywhere and live on pain meds my daughter is awaiting a life of hell she has watched me suffer daily nothing has ever worked except I got pregnant and my now five month old baby girl saved my life. ‘i went into a must needed remission when I was pregnant
i know hormones play a huge part in this nasty disease. I have lost my sight in one eye and my left hand is completly numb that is just the beginning of it. My town close to Peoria IL had a benefit for me last year No one not even alot of the doctors I have met even knew what it was. Don’t get me started on the Er docs !!!! Thank you and I know the disease sucks but you were chosen by God to help so many people God Bless You
August 18th, 2008 at 6:38 pm
Sanya, You are a remarkable woman!! I have had BD for 10 years and recently had it return with many symptoms, including joint pain, painful sores and stomach pain. Some days I could not get out of bed. I have started a new treatment and I thank God every day that I am pain free. We need more woman like you to put a face to the disease and I pray in my lifetime there will be a cure.Thank you much for being such a wonderful role model.
August 19th, 2008 at 10:33 am
Congratulations Sanya!!!!! G00D job!
We are celebrating your bronze here in Portugal.
**drex**
August 19th, 2008 at 11:17 am
Sanya,
My little sister is fifteen and has been diagnosed with Behcets disease. After seeing you run in the olympics you have been an inspiration to her and to my family. She is a dancer and has had troubles with practicing and seeing you in the olympics shows her that she can get throughit and can accomplish her goals. Thank you for not giving up and giving her hope.
Jason
August 19th, 2008 at 4:50 pm
Hello Sanya!
I am so sorry you have this dreadful illness but also very thankful that you shared your story with the world. As others have said, we really need a famous face put to this illness so that the world can learn about Behcets. Perhaps with your help we will not be an orphan disease for long!
I see many of my Behcets friends have already found your website.
I am not an athletic person (maybe having Behcets for what I now know was about the past 50 years has something to do with it!). However, I can promiss that I will keep up with your running and cheer for you!
Hugs,
Terry (female)/Texas
August 19th, 2008 at 9:20 pm
You got a medal!!!! We are so proud of you Sanya!!! This is a great accomplishment for anyone but to do so with the burden of an illness as well-Wow!! You may be a bit disappointed but give it a bit of time and you will see just what an mazing feat this is.
Thank you for doing what we can only dream about.
Hugs,
Terry/Tx
August 22nd, 2008 at 9:03 am
You are our hero-ess! Keep up the good work. I have had BD since 94. Along w/ other chronic illnesses. There are times when I want to give up (ie stop working), but want to stay busy also, so I am sure to take sick leave. You are a great inspiration. You GO GIRL!! Thank you for your blog, and support to spread the word.
When we are weak, He is strong!
Aloha, Laurie H.
August 24th, 2008 at 3:25 am
Dear Sanya,
my name is Andrea and I am an 38’s italian man.
For many years i suffering many symptoms( mouth ulcers, skin lesions, more fatigue), and one year ago i have had an episode of down deep ven thrombosis in down limbs and diagnose me the Behcet Disease.
From those days my life is chaged because the awareness and the therapy; however I’m fighting wth all my strength and I trust to get well.
The BD is a rare disease( in Italy affects 1 of 10.000 persons) very little known and often down-estimate from many doctors.
In Italy has born an association named SIMBA to increase the knowledge and support the people and family membres afflicted of BD, wich slogan is “RARES BUT NOT ALONE … TOGETHER WE CAN MAKE MUCH MORE”.
So I thank you very much for your personal engagement so helpfull who suffers with Behcet Disease: it is very encouraging for all us.
I saw you great performances in olimpic games of Beijing:compliments for yours 2 medals!
The final track of 4×100 relay has been shivering.
You are fantastic, continue on this way!
I wish you the future may be wealty of many success.
With respect, bye
Andrea
August 24th, 2008 at 4:15 am
Sorry I make a terrible mistake : 4×400 m relay !!!
Forgive me.
Andrea
September 5th, 2008 at 12:23 pm
Here’s a comment from Paulo, a friend of mine who has Behçets, who gave me permission to translate and post this here:
“I can’t stop thinking about this young woman. It deeply touches me. It reminds me of the day I was diagnosed with this disease and was told that I would have to abandon, forever, my intense athletic competitions. From this moment on, however, nothing will be like it was before. We have a worldwide ambassador to present this disease around the globe. For the young people who now receive a Behçet’s diagnosis, there is an example that they don’t have to be normal: they can be extraordinary!”
God bless you, Sanya, for accepting the role of being our voice.
Beijinhos,
debk, drex and paulo
Lisbon, Portugal
September 6th, 2008 at 8:14 pm
Hi Sanya,
I have a 17 year old daughter with BD. She is having a hard time not only with the pain of the disease but she is so depressed. I just hope she can learn to handle her BD someday without the depression. We went to the center in NY back in June and the doctor is wonderful. I so wish we could come to the walk to hear you and Dr. Yazici speak.
Congrats on the Olympics and God Bless you,
Karen
September 11th, 2008 at 9:25 am
Hi Sanya
Thank you for bringing the attention this disease deserves to a wider audience. I have suffered with this for several years and find you a true inspiration when it comes to not giving up on your goals. I was cheering you on from London, congratulations on your success, long may it continue.
Best wishes, Christina x
September 14th, 2008 at 8:16 am
Hi Sanya-
Congrats on your Olympics performance! It is amazing what you have accomplished. My nice, Brianna was recently diagnosed with BD after years of suffering (severe mouth ulcers, skin lesions, fatigue–since she was about 6, she is now 14) with no one being able to make a diagnosis until meeting Dr. Yazici. She is doing much better now and even has joined the CC team as a freshman in HS! Like you we are also of Jamaican descent. God Bless you and keep up the good work!!
Jen
September 14th, 2008 at 10:29 pm
Congratulations Sanya! The Olympics were awesome. I’m glad you are getting the chance to share your triumph and your illness to perhaps help someone else. I don’t have a firm diagnosis but I have had the symptoms for over fifty years. I live in an area of the South that does not have many doctors who know anything about the disease. I’ve never met anyone with it. The worst part for me is the mouth ulcers. Never have a day without them. I also have joint pain, infections in my lungs, colon,eyes, etc. I’ve been diagnosed with fibromyalgia, ulcerative colitis, arthritis, bronchiectisis, and other things. I take IgIv injections, use prednisone, and a dozen other meds. I wish I had been able to find someone to share with when I was younger. Keep blogging.
October 1st, 2008 at 9:22 am
Sanya,
Thank you so much for increasing the awareness of BD. My son is 12 and has been diagnosed with BD. It was a long and scary process to get to the diagnosis. Most doctors will take their time to label Behcets. My son is handling it so well, even when he feels his worst. He plays 3 sports and is always busy…he even works hard through most of his symptoms so that he can succeed like you have done. We were very happy to see that someone with behcets can achieve athletic greatness. You are an inspiration to me and shine a super bright light on the endless possibilities that my child can achieve.
Thanks
Gregg Miller
November 4th, 2008 at 9:03 am
Sanya,
I had the great pleasure of meeting you at the walk and cannot express in words how grateful I am that you have joined this cause. Your notoriety brings with it the ability to access companies and people that can help fund Behcets research and make the illness more well known so that others do not have to wait years for a diuagnosis and hopefully we will be able to find better treatments for Behcets with its increased visibility.
Thanks again, Sanya and good luck with all of your events! I will be rooting for you!
Carol
November 23rd, 2008 at 12:44 pm
Hi Sanya,
My 16 yr old daughter was diagnosed with Behcet’s last year. We had never heard of it (along with some of our doctors). My daughter has been playing soccer and basketball since 3rd grade. She has been on her high school basketball team since freshman year. When she read about you, her eyes lit up and she was immediately hopeful. Most of all, she didn’t feel alone. Fortunately she’s doing fine, she’s on immunsuppresents and playing ball. However, she’s been having breathing problems (feeling as though she can’t get enough air) while playing and training. Sports induced asthma has been ruled out, doctors don’t know what wrong. Have you (or anyone else reading this) hear of breathing problems associated with Behcet’s?
thanks again for being such a great inspiration! We watched you run in the Olympics; you were amazing!
Lisa
December 5th, 2008 at 1:48 pm
Sanya,
Thank you very much for bringing awareness to American’s about Behcet’s! We (Behcet’s sufferers) could not ask for a better role model and spokesperson for the disease!
I am also a female in my 20s who has had Behcet’s for about 4 years. I was not a professional athlete, but have always been a runner and was training for my 3rd marathon when the symptoms became debilitating and I could not longer run due to pain, lesions, arthritis, and fatigue. After numerous doctors in California, it was Dr. Yazici who was finally able to diagnose me and start a treatment. I’m very glad to know that he is treating you too!
As soon as I heard about you prior to the Beijing Olympics, I told all of my friends and family to watch and support your races. You now have a big(ger) fan base in the Bay Area! We were all so proud of you for your individual race and the INCREDIBLE last leg of the 4X400 relay! You are such an inspiration!
I cannot thank you enough for increasing awareness of Behcet’s disease!
Best of luck to you in your career, your fight against Behcet’s, and your engagement!
Sincerely,
Kate