Hello my friends, beginning this week I will start hosting a weekly podcast themed around our favorite subject, vitiligo.
I will discuss the emotional issues facing people living with vitiligo, review current vitiligo treatments, and investigate new vitiligo treatments being pursued by the medical community. In an effort to bring those who have vitiligo closer to those searching for a cure, I will be doing live interviews with doctors, scientists, & pharmaceutical companies, where you can call in and ask questions directly to these professionals.
Each show will include a segment dedicated to you, “Me and My Shadow”. I am particularly excited about this because it is the time in which I will read your poem, tell your story, answer your question, or discuss a particular topic of interest, that you’ve emailed to me prior to the show.
You will be able to stream the show directly from this site or
Listen to Vitiligofriends
Each podcast will also be available for download through our channel on itunes.
Please join me on this very exciting journey!
To submit to the “Me and My Shadow” segment, please email here. Remember to include your first name and state or country with your submission.
Hi My name is Karen and I developed Vitiligo when I turned 50. I’m 53 now and it’s getting worse. Sometimes I can embrace this and sometimes I can’t. I’m currently unemployed and fear that I will never be employed again in the public sector because of my appearance. I know several people that have it and we all deal with it differently. I have not done a lot of research, but do you know of any support groups in the Richmond, Va area? This seems like a good avenue for support, I’ll see what happens here and go from there. Thanks for trying to get the word out.
All,
As per Clinuvel they will have provide more information within the next 6 weeks. From what I am inferring from their press releases is that at least for those people whose vitiligo is very premature they can use Scenesse. Lets keep our fingers crossed for 6 more weeks :)
V
it’s good to be a realist, but it’s also okay to keep faith; and in this case, finding a cure for vitiligo isn’t a matter of if a cure is found; it’s simply a matter of when will it be found. Surrendering is a positive step when dealing with anything. It allows you to stop holding on to anger and live life more fully. i think you’re on the right track, luca :)
Thank you, Mary and Cheryl, your ongoing support means the world to me! It is people like you that inspire me to stay on my path and discover new avenues to get the word out about vitiligo. many hugs to you both :)
I read all the posts on this site for about 2 years …. I never said and this is the first time …. I suffer from vitiligo of 5 years. I appears after a strong stress on the forehead. right edge of the right eyebrow and also white wisps of white hair … Ting everything all the time and I’m sorry but I’m sure that will be ‘so all my life … I do not pretend I gave up after trying all kinds of fake cures … and this’ truth ‘I am convinced that there will’ never a cure. I live well my vitiligo this because I have not given up hope in something because I’m sorry this is my opinion. in the last five years I have never heard a new treatment. surrender is ugly but I am a realist.
leggo tutti i post di questo sito da circa 2 anni…. non ho mai commentato e questa è la prima volta…. sono affetto da vitiligine da 5 anni. mi è appara dopo uno stress forte sulla fronte. ciglio destro sopracciglio destro bianchi e anche ciocche di capelli bianchi… tingo tutto ogni volta e mi dispiace ma sono convinto che sara’ cosi per tutta la mia vita… io non mi illudo mi sono arreso dopo aver provato tutti i tipi di finte cure… questa e’ la verita’ sono convinto che non ci sara’ mai una cura. la vivo bene la mia vitiligine questo perchè mi sono arreso non perchè spero in qualcosa mi dispiace questa è la mia opinione. negli ultimi 5 anni non ho mai sentito una nuova cura. è brutto arrendersi ma sono realista.
Wow, Natalie,
I don’t know how you do all that you do for our cause!
I will be watching and will try to participate.
You are our star!
Congratulations! I offer you my support for this program — it will be fantastic and just what the community needs. Thank you for being such a great leader and may your program attract the best of speakers!