diagnosed with vitiligo 2 months ago, need help dealing with it
Posted , 25 users are following.
I'm a 29 year old female and I recently found out I had vitiligo about 2 months ago. It first started as a small patch on my face, I didn't think anything of it since I'm always in the sun until it started to spread. I have a darker complexion and the white patches are starting to spread more and more. They're around my eyes, on my chin, and on my cheeks. I've noticed a spot on my back and a few more spots forming on my stomach. I am not one that is obsessed with my looks, I've always been one that is confident with what I was given. But this, this is a hard pill to swallow. I can't stop starring at it, it's taking over my life, all I do is think about it. I am paranoid and constantly putting make up on. I don't feel comfortable being around others without make up. I am extremely self-conscious. When I first found out I had it, I broke down and started crying. I felt empty and hopeless. Reading posts of people saying they've had success with getting rid of it gives me a little hope and piece of mind. My Dr. Prescribed me with an ointment called Tacrolimus, has anyone had any success with this? Are there any other suggestions? I know this post is all over the place, but these are the thoughts that have been haunting me for the past two months. I try and not let it get to me, but it's a constant struggle. Any help would be appreciated. Thank you!!
0 likes, 20 replies
angela20282 Gizmo24
Posted
Gizmo24. Take a deep breath and let it out slowly. This is not cancer.
I totally understand your feelings of panic and despair but in my experience the way to keep a sense of proportion about it is to control it.
The way I have done this is to ignore all the snake oil and bogus claims out there from people who are not qualified to help you, only wanting to exploit you.
Most of us want to be the same as everyone else and cannot understand why God or whoever has given us this to cope with. But s*** happens.
My way of coping has many strands. I use waterproof camourflage creams, always trying to use the fixing powder too. Hands are tricky as I'm a painter and always in water. Use night tan to knock down the very white effect, particularly if you're dark skinned. Take 2 vitamin B12 tablets a day. Keep out of the sun or cover as much as possible. Sun screens will not stop you going darker everywhere else making the patches more visible. Always sit in the shade.
Learn to hold mirrors etc. and use a long handled brush to get to the places on your back if you are showing this.
Above all. Please please remember that other people will not be noticing individual bits of you as much as you think and only the general impression.
Until we have more advances in stem cell therapy I don't think the medical profession will crack this but it is coming. I am nearly 70 and mine started after the birth of my first child when I was 26. Vitiligo makes me sad but not desperate and I try to focus on how lucky I am and to be positive. I hope I have helped you a little but if you want to come back to me, please do.
All the very best.
azzy42 Gizmo24
Posted
Can you tell me when was the first time you saw vitiligo spot on you and how did it look? Was it a really tiny dot and started to spread later?
Gizmo24 azzy42
Posted
Thanks for your response, you give me hope. So I noticed my first spot back in the beginning of May. It started as a small blotch on my chin. I initially thought it was a sunspot, but as the days & weeks went it started spreading along my jaw line. Now in the past 3 or 4 weeks it's appeared around my eyes especially on the outterpart. Around my outer eye there is no pigmentation, it is white & spreading to my nose. My nose is still in the blotchy stage. Any advice would be helpful! Again, thank you in advance for whatever advice you have!
angela20282 azzy42
Posted
Azzy
You don't say what the treatment was?
azzy42 Gizmo24
Posted
First thing i did was stop consuming eggs and start healthy eating. I bought coconut oil i bought a cream from my home country applied that to my skin waited half an hour and then exposed my skin to UVB 311NM light.. you could take sun light too but with sun results comes much slower.
As soon as you finish with sunlight or uvb light wash your face and apply coconut oil to the spots. Also ginko biloba helps stops the spread you will also need vitamins, i wrote them down but not sure what they were, i am writing during my lunch break when i go home i will tell you excat vitamins you need.
As far as the cream goes i do have little bit left with me i always keep some incase i get a new spot..if you treat a spot thats not more than a week old it disappeares in few days like magic.
I hear people also had success using toblenorm cream which you can get off ebay for very cheap.
But i gurantee if you follow this you will have success.
I can even show you proof because i still keep photos of vitiligo that i had.
If i missed anything you can ask me.
Gizmo24 azzy42
Posted
Marise12 azzy42
Posted
BroBma Gizmo24
Posted
my 5 (now 6) year old was diagnosed a year ago and i took him to a dermatologist. she had us use a steroid cream which brought some pink back into the spots. now we are rotating weekly between a steroid and 2 non steroids. switching each week.
the weird part is the spots are not in typical places. one on his knee and another on his foot. and a small circle on his back. all have some pigment in them. in winter we werent as diligent about the cream use since he was pale and we couldnt see them. so they got bigger. but now religiously morning and night cream use! one is Triamcinolone and other is Alclometasome Dipropionate. we are getting a 3rd today and i think its Pimecrolimus. i have been told vitamin d and b supplements are helpful. as well as direct sunlight for 20 minutes a day with no sunscreen.
Canada12 Gizmo24
Posted
I'm also very interested in knowing what creams and vitamins you used. My husband recently started seeing patches, he is now taking B12 and was told no eggs and beef but there are so many different opinions it is hard to know who to follow. I have heard that homeopaths are successful in reversing vitiligo, we are trying to find a good one
aimee09537 Gizmo24
Posted
You are literally me!
I'm 29, female and have just been diagnosed too!
When I was 22 I noticed a patch downstairs, I was told by my doctor it was a fungal infection. I was completely embarrassed by it because I am too clean if anything. I took the cream she proscribed me but it didn't do anything and I didn't go back.
This year I moved from Birmingham to Banbury, it caused me a lot of stress at the time.
I noticed a patch on my hip in May. I then went on holiday to Cyprus and noticed a patch on my knee wouldn't tan. I also have it under both arms and it's started to appear on my hands and face. I was refered to a dermatologist and had to have a horrible skin biopsy to make sure it was vitiligo downstairs, which it is!!
I can honestly sympathise with you. I feel like I'm grieving some days if that makes sense? I also love the sun and being tanned.
I think I am starting to accept it because I was told I may have lichen Sclerosus as well as Vitiligo (Hence the nasty biopsy). When I was told yesterday that it was vitiligo I was so so pleased because I really didn't want the other issue as well. Life can be a huge pain in the ass at times, but it's not life threatening and there are success stories out there. I have also been prosribed that ointment but stopped taking it because I had so many weddings and you can't drink using it. It made my face burn
If you are anything like me you won't be able to take positive comments straight away because it's so new and it literally comes on from no where. If you need to chat I can always give you my email.
It's good to talk about it!!
Aimeè x
sdenaj Gizmo24
Posted
Hello got vitiligo at 22 and nearly 42 . I try to control it by doing uvb at dermatologist. If you are at initial state please see the doctor at the earliest.
There are parts That can be controlled ie the face.
Hands feet are impossible for recovery. But you can see dermablend brand mark for your face it s very good . It covers all day. Éven in swimming pool. For my Hands i uséd tanning lotion
Cream i used protopic 0,1%
Breelarae Gizmo24
Posted
Gizmo24,
I am also a 29/f with Vitiligo but I was diagnosed about 4 years ago. It started as a small dot between my eyebrows and eventually grew in a long shape from between my eye brows to about the bridge of my nose. I knew deep down what it was before I went to the dermatologist, but after he actually confirmed it, I broke down and cried like a baby in my car. I know this is an older post, but wanted you to know someone else out there understands the devastation and you are not alone <3
Throughout the past 5 years, I have just kind of accepted it over time (because what else can I do) and since my skin lightens up in winter, it wasn't even that noticeable so I didn't think much of it. However, I do tan easily and my skin began tanning like nobody's business in March this year. I was like this is way too early! By the time summer actually hit, the skin around my white patch was so tan that people have begun to point out the patch and ask about it. This had never happened before so now I'm getting pretty self conscious about it and decided to try to do something.
I came across this company that sells a topical herbal cream called "Vitiligo Green". I ordered a bottle and should receive it by tomorrow. It was pricey, but I'm going to try everything natural first before anything else. The steroid cream the derm gave me years ago was worthless and just aggravated my patch like nobody's business, so I figure the natural route is best. Anyway, I will post an update here if this herbal cream works.
Hopefully you have found something that works for you, but if not, keep your chin up girl..we are all here for you
Thomas00517 Gizmo24
Posted
laxjay Gizmo24
Posted
Hi dear.First of all say thanks to God that this is very common issues. Nothing is happened to you.its just a melanin loss.since this is starting stage you can get rid of your disease. Be confident. I too had vitiligo .I took so many medicines and my condition became worst stopped everything and started Homeo Medicine with phototherapy. I used a handheld device for doing phototherapy .Now almost everything is cleared. Never ever loose your hope. Don't think of others. Be bold........
juju85 Gizmo24
Posted
Vitiligo is only a cosmetic issue, so thank God health wise is not threatening. So, this should give you a reason to smile and be thankful and positive by thinking there are worst things and diseases in life and gladly you didn't get these.
Thought of sharing my experience and how I am working on treating myself. I almost read all the websites, forums...etc that are related to Vitiligo to know what it is, and how to solve it.
I got a spot in my scalp close to my forehead along with white hair. I am currently treating it as follows and I am seeing result. I've started the treatment since 2 months ago, and I am seeing improvements. I see clear new brown dots showing and it is increasing with time (Thank god for this <3)
Below is how I am treating myself. Note, this is for adult never apply it on kids. Plus, it is not good if you're pregnant or planning for that.
To expedite the treatment, I am taking:
- Folic Acid
- Vitamin B12 (multivitamin)
(Be careful, too much vitamins are not good as well, so take it daily as prescribed)
Medicine:
1- Protopic cream ; apply twice a day a little of this cream don't get so excited putting too much.
2- Oxsoralen liquid; apply ONLY one time a day and only in the patches coz It is strong.
I started first %0.01 then once finished, I started to use %0.25. When you put it, stay home for 15 to 30 minutes, then expose yourself to the sun.
* With %0.01 I was exposing myself to the sunlight not in a very hot sun though "only light sun" for only 3 minutes, then step by step till 15 minutes
* With %0.25 I was exposing myself to the sun for only 1 minute first, then after a couple of days 5 minutes.
(Make sure to wash the Oxsoralen after exposing to the sun, it is better. Plus know that Oxsoralen only works and be effective with sunlight UVA). To expose yourself to light during sunrise or sunset is good enough and SAFER.
I also apply:
- Organic coconut oil (Use organic).
(Nobody told me about applying coconut oil, but I have read that it is good. I know it has so many benefits, and has no disadvantage, so I am using it daily when home or before sleeping. And I believe it does help me.)
Important Notes:
- Oxsoralen is a strong medicine, so you could get BURNED and you might not know that but the next day or so, therefore do not expose yourself to too much sun thinking this will solve vitiligo in a day like pretty fast. No, be patient, stress free, smile and be positive.
- You may hide it by skin color makeup during your treatment. Try to be positive and stress free, as this will help expediting the treatment.
- Vitiligo teaches patience, teaches you to love yourself and discipline. This means you have to be discipline applying the medicines and taking your vitamins daily. Plus, it gives you a reason to be like please don't stress me I need to smile, be happy and love myself to cure myself.
- If you feel kinda burnt for whatever reason, stop oxsoralen for 1, 2, or 3 days till heals then start again.
- Vitiligo in the head, forehead, and places that have hair have a higher chance of getting treated faster than hand and feet, BUT this does not mean nothing possible.
Finally: You'll find so many people or websites recommending special treatment for business "scam", coz they see
people with vitiligo sometimes are desperate and willing to pay and do anything to cure, so be careful not to fall for this.
All the best ,