Guest Bloggers | Clinuvel Pharmaceuticals news and discussion blog

Hang in there! Take back control! (Part 1)

Tuesday, February 21st, 2012

We recently invited Richard Roosenboom to share his experiences as a parent of a child with a rare disease. In the coming weeks we will publish part of the Roosenboom’s story in a four post series. You can read the first post here: Too rare to diagnose: Hydroa Vacciniforme.

In 2003 our daughter Simone (then almost six years old) was diagnosed with Hydroa Vacciniforme (HV) by a leading Dutch dermatologist with over 35 years of experience. He listened carefully to our story, retreated for a moment to think and consult some books, and then came back and pointed out the page in a book where HV was described. He had never seen it in his life! After over three months Simone’s illness finally had a name and a history, and we felt like having a future again. (more…)

Too rare to diagnose: Hydroa Vacciniforme

Friday, February 17th, 2012

We recently invited Richard Roosenboom to share his experiences as a parent of a child with a rare disease. In the coming weeks we will publish part of the Roosenboom’s story in a four post series.

This year, 2012, sees calendars with February 29^th: a rare day that is only seen once in every four years. Thus it is logical that this day is chosen as the worldwide Rare Diseases Day: a day where extra attention is sought for many rare diseases and disorders from which adults and children suffer every day.

Often the causes of rare diseases aren’t known. There’s often no treatment (yet). That’s why the world needs Rare Diseases Day: to show that these patients too are entitled to care and treatment, like any other. (more…)

A new treatment regime

Friday, July 15th, 2011

This is the second of a two part series on vitiligo treatment from guest blogger Liz Tyler, to read the first part, click here. Liz runs @VitiligoProject and the Vitiligo Project blog, an initiative she founded to help others, like her, who are living with vitiligo.

I’ve had vitiligo since childhood and, like many others who have the disorder, I find it a challenge to live with. Whether you’re able to accept your vitiligo or not, it’s needless to say it takes a lot of getting used to. For me, I’ve never been completely comfortable with my skin and with a career in marketing and PR, where image is really important, I’ve always been willing to try new treatments and look for therapies that could help cure it. (more…)

Diagnosis and early treatment of vitiligo

Monday, July 11th, 2011

We’re delighted to host guest blogger Liz Tyler. Liz runs @VitiligoProject and the Vitiligo Project blog, an initiative she founded to help others, like her, who are living with vitiligo. This is the first of a two part series on Liz’s personal treatment experience.

I’ve had vitiligo for thirteen years and like many, my journey of living with vitiligo hasn’t been an easy one. In this day and age when we’re all made to think we need to look like Kate Moss – it’s needless to say having patchy skin is a setback. (more…)

The Social Stigma of Vitiligo in Africa – Part 2

Friday, May 6th, 2011

This is the second blog in a two-part series by Ogo Maduewesi of the Vitiligo Support and Awareness Foundation (www.vitsaf.org); to view the first part, click here. In this post Ogo continues her discussion about the types of difficulties West Africans with vitiligo confront on a daily basis.

Although people – particularly in my country, Nigeria – will always give you the impression that they don’t have an issue with vitiligo, many do segregate or ostracise those with the condition, especially in the rural areas. There is a social stigma attached to vitiligo, affecting the social well-being of patients. Especially in African countries, where the people are dark-skinned and the contrast to their natural skin tone is more obvious. (more…)

The Social Stigma of Vitiligo in Africa – Part 1

Thursday, April 28th, 2011

In the first of a two-part series, guest blogger Ogo Maduewesi, founder of the Vitiligo Support and Awareness Foundation (www.vitsaf.org), speaks candidly about the stigma associated with vitiligo and the challenges faced by sufferers in West Africa.

Vitiligo is a hugely stigmatised condition, especially in Africa. Facing not only a visible, disfiguring skin problem, many patients also endure psychological, psychosocial and emotional stress from the disease and its stigma. This usually results in increased susceptibility to vitiligo: the stress of stigmatisation can often lead to further progression of the disease. (more…)

‘The freak out will happen’ – Lee Thomas’ diagnosis of vitiligo

Tuesday, March 22nd, 2011

As part of our ongoing guest blogger series, we’ve invited Lee Thomas to share his experiences on the Clinuvel blog. Lee is an award winning US journalist who has spoken widely about his experiences with vitiligo, including in a documentary entitled ‘Turning White’. You can learn more about Lee at http://www.leethomas.com/

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“What the…?” “Why me…?”

“Where is that trucking school info…?”

“My career is…”

I couldn’t even finish most sentences. (more…)

Vitiligo in West Africa: The question of prevalence

Wednesday, March 16th, 2011

As part of our ongoing guest blog series, we have invited Ogo Maduewesi of the Vitiligo Support and Awareness Foundation (VITSAF) to share her unique experiences with vitiligo. You can visit VITSAF online at www.vitsaf.org

There are no statistics on the number of vitiligo patients in Africa or West Africa; but we truly have so many cases. The skin colour contrast makes it very obvious, more so than how it appears on a white person’s skin.

We work with the common statistics that 1-2% of the World’s population have vitiligo. To get an accurate number in Africa would be very difficult because the majority of people living with vitiligo quickly lose hope and no longer visit their skin clinic or dermatologist. (more…)

Vitiligo in West Africa: VITSAF

Tuesday, March 8th, 2011

As part of our ongoing guest blog series, we have invited Ogo Maduewesi of the Vitiligo Support and Awareness Foundation (VITSAF) to share her unique experiences with vitiligo. You can visit VITSAF online at www.vitsaf.org

It seemed as though vitiligo was like a newly discovered health condition in West Africa when Vitiligo Support and Awareness Foundation (VITSAF) started working on the cause. It’s a condition about which the majority of West Africans (95%) knew nothing, yet with which so many people in the community were living. (more…)

Treating ‘sun allergy’: an ongoing quest

Tuesday, March 1st, 2011

Following a curious tweet on her ‘sun allergy’ we invited Amanda from Texas to share her experiences as a guest blogger in the hope that they may help others. This is the second of two parts, you can read part one here.

Hiding from the sun wasn’t an option. Granted, I was reluctant to incur the wrath of UV light: the itching, the bumps, the disfiguration that affected my confidence. Thankfully my PLE was confined to my arms.

Yet, with dermatologists telling me nothing could be done outside an occasional cortisone injection, I was determined to explore any and all treatment options. (more…)