New and scared!

Hi, my 9 year old daughter is currently being diagnosed and I had was terrified when I read what this rare disease was. I found this society by chance and I don't know what I'm expecting really.... Bit daunted by the whole thing. I'm shocked about how many people are affected and have found it so useful reading other people's experiences. The dietary aspect I've found very useful and am determined to help her by trying anything! It's such a horrible thing. I live in Lancaster. Where is my nearest meeting or info point? Any help would be much appreciated.

7 Replies

oldestnewest
  • Hi Hannah and welcome to this site. As an old hand with BD and this site and before I hope I can ease your mind. Firstly let me say how sorry I am that your daughter has this disease and how hard it must be for you as her mother. Nobody knows how we contract Behcets and how differently we are all affected by its many symptoms. The most important issue is to come to terms with it, get the right diagnosis and treatment and an understanding doctor. There will be bad days and good days but you can lead quite a normal life. I have had Behcets for over 30 years and managed to have two more children, get back into work, travel the world and more. Be strong and positive, listen and question the doctors re meds etc start a diary of symptoms, feelings reactions to meds, take photos of any ulcers, rashes etc and take these along with you to any appointments and also a family member or friend for support. Most importantly for your daughter.......do let her live life as normally as possible and encourage her to be patient and strong, exercise such as walking, running, swimming and outdoor time is essential for the disease and the depression that can come with it. Also if she is tired let her rest as much as she needs especially at the onset of a flare.

    Now we must forget you, do get your rest and stay strong for her and yourself. Any questions about anything it's worth looking on the site, but be careful not to read too much into everything, we all have differing levels of pain, stress, and feeling sorry for ourselves at times but these things pass and life goes on.

    The nearest Centre of Excellence hospital for you is in Liverpool and I suggest you get an appointment for your daughter as soon as possible. You will find this information a don mush more on the original BD site at........behcetssoiciety.org

    If you have any questions or more advice feel free to private message me.

    I wish you and your daughter all the best and do let us know how you get on.

    Hugs

    Billi

  • Hi billi, thank you for your message. I've been overwhelmed with the replies I've had! It's actually been a great help knowing I'm not the only one struggling with this! I haven't really told holly yet and I won't until we have a diagnosis in June. It's hard keeping my upset n guilt from her but I won't put worry on her until I know more of what it involves and can give her the info she needs. I will keep u informed of her progress. And thank you again. 😊 x

  • Hi Hannah86, I'm so sorry to hear your daughter has been diagnosed with Behcet's. It's really hard not to feel overwhelmed with the info that's out there, especially if you come across scary descriptions of what can happen with this disease. I'm sure (like most moms) you'd do anything to take this illness off your daughter and go through it yourself instead :-(

    I've had Behcet's for 35 years, and I've been pretty active in the Behcet's community for the last 15 years, mostly in the US. I wanted to let you know that I'm still able to work, I'm not disabled, I have my vision, and I have two healthy kids. That's not to say I never had scary symptoms, but I've been able to get through them and keep going. Your daughter has a big advantage because she's actually got a doctor who was willing to make the diagnosis. That means she can get treatment a lot earlier than I could -- it took 17 years before I was able to get a diagnosis, so (for example) I have a lot of scar tissue on my retinas because my eye problems weren't treated correctly in the beginning. Your daughter also has access to a lot of newer meds that weren't available when I was diagnosed, AND you have access to doctors who know what Behcet's is and how to treat it, through the Centres of Excellence -- that's a big advantage.

    The Behcet's Syndrome Society website is a great source of information, and you'll get a lot of support in this group. Facebook has a lot of different Behcet's support groups, too, including one called "Parents of Behcet's" at facebook.com/groups/5423997... If you're interested in joining, send me a private message with your email address and I can send you an invitation to join the group.

    Wishing you and your daughter all the best,

    Joanne Zeis

    behcetsdisease.com

  • Hi Hannah. I too have just found this site and only joined yesterday.

    I have a 12 year old daughter who has had Behcet's symptoms since she was three years old. She was finally referred to Great Ormond Street Hospital for Children in London a year ago and was diagnosed with Behcet's June 2014. She was started on Colchicine and prednisolone in July and it helped to reduce her symptoms for a few months. However, in the autumn she started to have one flare up after another and she was getting her period for 10 days at a time with only 6 days in between. The poor child was a complete wreck. It was a nightmare! In February she was started on Azathioprine as well as the Colchicine and an oral mouthwash cocktail which includes steroids. She was also given a prescription for a topical ointment to be used on the genital ulcers. I must say she is a different child now! Although she is still seen by Great Ormond Street and has had excellent care, she went to the Behcet's Centre of Excellence in London on the 17th April for the first time and they will continue to see her as well. We were very impressed! Apparently the Behcet's is still very active in her system however the hope is that once she is on the Azathioprine for a few more months things might settle down a little more.

    Although I am still very much in the steepest part of the learning curve, I would think the key for you and your daughter is for her to be diagnosed and to get under the regular care of the Behcet's Centre of Excellence in your area - Liverpool? Once she is diagnosed, I would also join the Behcet's Society.

    We are currently working on providing our daughter's school with a medical letter from the Centre of Excellence which we will combine with information from the Behcet's Society which will help to educate the school community about the syndrome. Although our daughter is doing brilliantly at the moment, she does still struggle terribly with exhaustion and headaches which makes getting the mountains of homework done a struggle and it means she has next to no social life outside school. So far, we have yet to advise the school as she does not want to be perceived as "different" so is VERY stoic and soldiers on but we believe it is important for the school to become educated, especially as the stress levels are sure to increase as we get closer to the GCSE years!

    I would be interested in hearing your progress and if I can be of any help at all, please do not hesitate to contact me either this way or via a private post. All the best, Lesley

  • Hi Hannah would you mind me asking about the dietary aspects? I'm in

    Australia and we don't get a chance to get toi the CoEs.

    Thanks Lesley

  • Evening Hannah, what a remarkable mum you are doing your research. I'm so shocked at how young your daughter is with a diagnosis. I suffered with BD from the age of 15/16 but was diagnosed until I was nearly 20 & that was 17 years ago!! I can only imagine what life must be like for you. Over the years I've tried numerous of medications until 4 years ago & have settled for the drugs right for me. I agree don't read too much into the whole symptoms as your daughter being young & healthy might only get a few of them. I also remember the days where I didn't want to meet my friends for lunch as my mouth ulcers in & on my tongue were huge I struggled to talk let alone eat, also remember holding my urine in all day & work to go home to sit in a bath of salt to ease the pain. I was embarrassed of myself but as life has gone on I began to except my condition. The chronic fatigue & headaches are my bug bear they grind me down but your daughter being young & fit the medical professionals are becoming more aware. I remember many of doctors I've had to educate on my journey which in time has become less & less, done my own research. Tell your daughter not to be a ashamed & encourage her to talk to you when she is feeling under attack but this menace BD.

  • If you message me I will be happy to give you my telephone number so that you can call at any time

You may also like...