Welcome to VKH support

21 Feb

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This group is for all of us with VKH, uveitis and eye disease.

Sight loss is a scary thing to live with. I should know, I have VKH, vogt-koyanagi-harada syndrome myself. I very nearly lost my sight altogether.

Its when I began to look for support groups that I realised how little support, for VKH in particular, there is. That is why I decided to set up this support group myself.  The numbers of VKH sufferers in the UK are very low but those numbers still need support!

So, you are welcome to contact me if you have questions or would like more information. If I dont get back to you straight away, do not worry. I have chronic fatigue and sometimes my replies may take a little time. Please bear with me!

Best of health to you all

Danielle

xxx

 

P.S – Please remember to leave me your e-mail address so I can contact you directly!

14 Responses to “Welcome to VKH support”

  1. tatiana wentworth March 4, 2008 at 5:52 pm #

    Hi Danielle,

    I was diagnosed with VKH in October after I almost lost all my sight out of the blue. I woke up one morning and my vision was blurry and day after day it just got worst. My vision in both eyes got to about 20/80 and then they put me on Prednisone and all kinds of eye drops. Mym prednisone is at about 70 mg. and I hate this stuff. It almost seems like the side effects are worse than the disease. I would like to know how long did you have to be on meds before you got to be teppered down or any input you can give me. Since this is such a rare disease I have no one to speak with and would appreciate your responce. Thank You,

    Tatiana (Tina)

  2. aviminz March 5, 2008 at 8:01 am #

    Hi danielle,
    my self Avinash from india nice to see the your blog that you have started something for VKH.
    My wife is suffering from VKH Since last one year 10th April 2007, she got diagnosed (16th April 2007) in early stage when she has only eye blurring. Treatment started with high doses of corticosteroids (prednisone) then slowly tapering. It is almost one year but still she is taking minimum doses (approx. 10mg/day) then after she is not feeling completely cured, because whenever she left or stops the medicine after 7-10 days blurring reoccurs (very less blurring).
    My question is when she will be cured completely and will stop taking steroid? Because doctor also do not know much about VKH she is probably first patient of its kind to him.
    Avinash
    Mumbai, India

  3. vkhsupport March 10, 2008 at 1:21 am #

    Hi Avinash

    Thank you so much for your e-mail.

    Its really late at night here but I wanted you to know that I have read your e-mail and I will answer it properly tomorrow. Your wifes case is very similiar to mine so I hope my information will be able to help you. I may also be able to give you the names of some contacts who are specialists in VKH.

    My thoughts are with you both.
    Much love to you
    Danielle
    xxx

  4. vkhsupport March 10, 2008 at 1:50 am #

    Hi Tatiana

    Again, thank you so much for your e-mail.

    Its really late at night here but I wanted you to know that I have read your e-mail and I will answer it properly tomorrow. Your case sounds very, very similiar to my own was at the begining.

    I may also be able to give you the names of some contacts who are specialists in VKH.

    My thoughts are with you.
    Much love to you
    Danielle
    xxx

  5. zena August 21, 2008 at 6:28 pm #

    Hi danielle
    Thank you for making this group! My local GP doctor advised me to look into finding more info on this via groups or societies but it’s been hard to find anyone who knows anything about VKH and Uveitis it in the UK. I am 25 and was diagnosed with this seven months ago, I had to leave university and with all side effects I cannot work until I am better. I would like to get in touch with people who have this condition, and to lean about it more and what to expect. I have seen MANY doctors over the last nine months at Moorfields Eye Hospital and almost (only one doctor so far, the one who diagnosed me but has left the department now!!) none do not know much about this and on how to deal with this condition, so therefore I need do my own research now while I can see better. I lost some of my sight for a few months and now it is coming back but I am starting to develop other side effect which is why I would love to discuss this with other vkh (Vogt-Koyanagi-Harada) syndrome patients or anyone who is an expert in this field about this disease. They have put on steroids 80mg and have reduced them slowly but I have developed so many side effects from it. I have blown up, I tend to throw up after meals, my hair is falling out, thinning skin, easy bruising, my hands shake and legs start to shake, I get tired from walking, out breath easily my legs are all covered in purple marks, like the skin is thinning, got dark patch’s on my neck and chest, get these weird back and stomach pains, continues sore throat for four months- I have had three types of antibiotic, none have got rid of them, my immune system is low, I am taking bone pills, I am taking pills for stomach ulcers and I get this severe pain on my right of my head, I thought it was the pressure pain which went up 49 but it increased after my Glaucoma operation and then they gave Amitriptyline and has got rid 90 percent of the head pains, I still get eye pain and worry my slight will go all the time, weight gain, that I find it hard to do anything, I feel like a balloon, muscle weakness, puffiness on face and hair growth on the face, and got so many other side effects things going on. They have said I will be on this long term Prednisolone but I feel like its destroying my body more so. I understand that I have to take this as it’s the only to save my eyes but feel like I see a different doctor every week and they all say different things which does not help me and I feel like they are motoring me. I go to the Glaucoma clinic and the Uveitis clinic but both say different things and feel lost. My immune system is so weak that two weeks ago I kept shaking uncontrollably, I went blue and felt really cold for two hours and this happened for three days running until I was hospital on the their day and they kept in for three days. They various tests and scans but could not find where the infection was coming from, my heart rate was really low and temperate was high, they put on a drip but decided not give anything else until they know how deal with what I got.
    So if you any one in the UK that might know about this illness or know any experts that might have any useful facts , then please get in touch and ask them to share their information with me please and my GP. I have to do this on my own since no one has a clue and the steroid’s are distorting my body. I know I have to take them long term as that’s the only thing from me going blind but I want to know some my other side effects if they are part them rather than the doctors just saying nothing or that its part of the steroid which some things are not I know but they can’t tell its part VKH as they don’t much about it. eg, losing my hair, getting lighter in my skin, and got these brown patches all over my neck and chest. If you could find me any one to get in touch with that would be a great help. Sorry for going on, but I would like some help.
    Thank you

    Yours

    zena

  6. Peggy Karabela October 22, 2008 at 8:26 pm #

    Dear Zena,
    I just read your letter and my heart goes out to you. I too have been suffering from this terrible desease (VKH) for 21 yrs. Mine started suddenly one night w/severe headaches and eye pain. It took about 2 months for it to be diagnosed and I was put on 150mg of prednisone daily for a few months and gradually reduced to 10mg. I also ballooned and lost alot of hair and had dry patches of skin on my body. I have diminished hearing in one ear and I have lost central vision in one eye, but thank God the other one remains stable. It is not an easy thing to have and unfortunetely there is no cure. I have been on immunoseppressants all these years (IMMURAN) and a few different eye drops daily. My vision has remained stable and I haven’t had a flare-up in about 5 yrs but I too am very scared that one day I will wake up and the other eye will also be gone.
    All I can say is have some faith that they will find a cure and I hope you have support from family and friends because that will keep you going.I have raised 2 great kids since then and they along with my husband are always there to make me feel better when I feel sorry for myself.
    Don’ t give up and all the best to you
    Hope to hear news from you soon
    Best regards
    Peggy

  7. angel2151 November 16, 2008 at 1:53 am #

    I am so HAPPy to have finally found a support group for vkh patients. I was diagnosed ten or eleven years ago. My story is so simply to everyone here. I was on prednisone for a long time. I then was put on cyclosporine that worked for awhile and I am now on methotraxate. My eyes seem to be calm at this time. It’s my body that drives me crazy. I am also always tired. I use to be a very active person. So It’s hard for me to be home all day. I’ve been like this for the last months or so. My doctors have never heard of this illness much so when i get recurrent headaches they think I am there for the drug. I have literally been in bed since yersterday. Looking for support group and it five in the evening AND I Found it.

  8. Rita Ferrity December 6, 2008 at 1:55 pm #

    I was diagnosed with VKH 3 years ago. I live in Northern Ireland and I think I am the only person in this country to have it. I tried to contact you some time ago on another site but never got a reply. I feel very isolated and no one under stands this illness. Please some one reply to this and at least I will know I’m getting through to someone Rita

  9. vkhsupport December 18, 2008 at 7:07 pm #

    Hi Rita

    I am very sorry for not getting back to you. I have chronic fatigue you see and ive been ill for the last two months, mostly be bound. Please except my apologies.

    VKH does make you feel very isolated. I know I do. You are right, no one understands. Even doctors are mostly in the dark with VKH. It rips your life apart and no one seems to want to put it back together again. Thats how I felt.
    Again I am terribly sorry for not getting back to you. I work on this group when im able but sometimes the CFS gets the better of me.

    Do you have a doctor who understands you condition? That is often the hardest part and the most important part.
    I seem to be the only one on the south coast of England. It makes you feel so alone doesnt it!
    I am glad you found the site and I always try hard to answer emails and keep the site running well.

    Best of health you
    Danielle
    xxx

  10. Lynn February 12, 2009 at 10:34 pm #

    Just checking back in. Left a message a couple of weeks ago. Just revisted my Dr, the inflamation is back in both eyes. Have began the steriod eye drops again, will return to Dr in 2 weeks to check up, if not improvement back on the oral steriods. Feel very hopeless right now.

    Lynn

  11. Danielle Jessica February 13, 2009 at 2:50 am #

    Hi Lynn

    I have just replied to you via e-mail but wanted to reply to you here as well.

    Im sorry to hear the inflammation has returned. Dont be too disheartend by it. The inflammation may have returned but remember, it cant attack the back of the eyes again and that is where such drastic damage can be caused when it first happens! If the VKH does return it is only able to attack the front of the eyes and that is easier to treat. Still not very nice, I know.

    I hope things get sorted for you quickly. Keep me posted!

    Much love
    Danielle
    x

  12. maniss matilda rich February 20, 2009 at 6:19 pm #

    hi my name is maniss rich
    i am 20 years old
    and i have eye disease (VKH)
    i was diagnosed on december 22,2007 and i had lots of blood works and my eyes were very red and it was blurry vision and i had a bad headache and its been 1 year i have this eye disease
    and i hate it alot i wish it could go away anyways i was taken 80 mgm(prednisone) a day and some eye drops and i was down to 60 mgm(prednisone) to 50 30 20 and then 10 mgm and to 5 mgm its been 1 month and 2 days now that i haven’t take the pills. my eyes are starting to get red again and i am really tired and maybe thats why my eyes are red thats becuse i am tired i think idk and sometimes i really feel weak.

    xoxoxoxoxoxo Maniss rich

    • vkhsupport February 20, 2009 at 10:35 pm #

      Hi Maniss

      Its fantastic that you are no longer on steroids!!! Well done.

      Its a tough battle reducing the dosage and is often a case of two steps forward and one step back. The redness in your eyes could simply be tiredness, on the other hand it may that you have come off of the lower dose of steroids just a little too quickly! If this is the case then dont worry! Just be patient with body. Also, give yourself time to heal. No long hours infont of TV’s, computer monitors or harsh lights. Help yourself to heal!

      Are you still using eyedrops?
      You should really get the redness checked out though. Better to be on the safe side, youv’e come this far after all!

      You say you are feeling week. What medications are you on? Its possible that the weakness is a side effect. It could also be your body’s response to now being free of steroids! Again, have a chat with your doctor.

      I always say “listen to your body!”. If you are very tired then your body is trying to tell you that you need more rest!

      Thank you for sharing your story with us.

      Happy healing
      Danielle
      x

  13. vkhsupport February 20, 2009 at 10:40 pm #

    P.S

    MANISS!

    Out of interest, Which country are you from? Im trying to get a idea of the VKH numbers in diffrent countries!

    Thank You

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