Save My Skin exclusive: Man with Brooke-Spiegler Syndrome needs immediate care

Victor is now 68 and wants to see if he can get rid of this skin disease on Save My Skin. Pic credit: TLC.
Victor is now 68 and wants to see if he can get rid of this skin disease on Save My Skin. Pic credit: TLC

On the next Save My Skin on TLC, we meet a pleasant man, Victor, afflicted with a very rare disease called Brooke-Spiegler Syndrome. Show star Dr. Emma Craythorne greets him in her office for a consult. In our exclusive clip, we see there is some bad news and a bit of good news too.

The two are discussing his medical condition which first became pronounced when he was in his 20’s. He is now 68 and is hopeful there is a new technology or treatment to rid him of these unsightly bumps on his head, face, and neck.

Victor has Brooke-Spiegler Syndrome which is a really rare condition. As Dr. Emma examines his head, she explains what the disease actually is manifesting for Victor and what to look for.

She says, “Victor, this is a combination of benign tumors of the skin on the scalp. You’ve got these tumors called cylindromas and they are tumors that are made up of part of the hair follicle around the sebaceous gland. It’s different than a cyst. When you cut in the cyst, it has a nice kind of juicy or cheesy material inside that pops out and has a very stinky smell with it. But whenever we try and cut into these this is a hard firm little lump that comes away.”

She adds, “Brooke-Spiegler Syndrome doesn’t have a cure as yet modern medicine doesn’t have the one to fix this…but we can manage it and we can help support people who do have this. It is a very rare condition and most people will never have met somebody who has Brooke-Spiegler, so you’re very rare, very special!”

What is Brooke-Spiegler Syndrome?

Brooke-Spiegler syndrome is caused by mutations in the CYLD gene with an autosomal dominant pattern of inheritance. Brooke-Spiegler syndrome is not cysts like you see with Dr. Pimple Popper, but is a condition involving multiple skin tumors that develop from skin appendages such as sweat glands and hair follicles.

There is also a predisposition to three types of benign skin appendage tumors:

Cylindromas — solitary or multiple tumors on the scalp
Trichoepitheliomas — papules over the face
Spiradenomas — painful nodules on head, neck, and trunk of the body
Less frequent are the salivary and parotid gland tumors.

People with this skin disease usually present symptoms in late childhood to early adulthood with papules and nodules on the scalp, face, and neck. These lesions increase over time. However, these tumors are usually considered harmless, but there are reports of malignant transformation.

Who is Dr. Emma Craythorne?

The newest TLC star, Dr. Emma brings incredible humility, heart, and humor to each of her cases and most importantly, gives patients their confidence back. Dr. Emma is an expert in treating all types of skin conditions. Surrounded by a top team at her Harley Street Clinic in London, she treats patients suffering from unusual conditions including disfiguring keloids to massive lipomas and rhinophyma.

A caring medic who caught the eye of TLC, Dr. Craythorne is a Consultant Dermatologist, Dermatological and Laser Surgeon, and Mohs Micrographic Surgeon. Originally from Northern Ireland, Dr. Emma moved to Scotland to study Medicine and Surgery, completing her postgraduate medical specialist training in Edinburgh to become a member of the Royal College of Physicians.

Dr. Emma has since established a successful private practice in London, where she has created a bespoke space for treating patients with complex dermatology needs. Dr. Emma has expertise in all areas of skin scarring, skin cancer, general dermatology, and cosmetic dermatology, and has won awards for her work.

Exclusive preview and what’s to come on Save My Skin:

Watch as Victor is in consultation with Dr. Emma. Also on this Thursday night episode, 24-year-old Elise comes to see Dr. Emma in a last-ditch attempt to get help for an uncommon skin condition.

The genetic anomaly has given her painful abscesses which grow in the folds of her skin. These abscesses swell, leak, and leave open wounds. Can Dr. Emma’s cutting-edge treatment be the solution that Elise so desperately needs?

Dr. Emma attempts a new type of surgery on 68-year-old Victor who has a rare, hereditary skin disease. So will the newly named ‘Victor Technique’ work for Victor? In consult with her patient, Dr. Emma explains the details of it all.

Programming note: Save My Skin will air at a special time on Thursday, February 20 at 11/10c, right after My Feet Are Killing Me then moves to its regular time at 9/8c on Thursdays starting March 5 on TLC.

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Kay Pierce
Kay Pierce
4 years ago

I also have BSS and I have a Facebook group for those who have BSS that offers help, support and encouragement while raising awareness about it. If you’d like the link, please contact me, thanks!