Help Us Fight Against BSS

What is BSS?

BSS = Brooke Spiegler Syndrome, an incurable, hereditary skin disease that causes benign tumors to develop on the head, face, neck, back and chest areas of the body. BSS is very rare, but found globally and it affects both men and women.

Why Is This Campaign Important?

Besides being "rare", "incurable" and "tumors"... this campaign is very important due to the fact that although BSS has treatment options to help remove the tumors, these options are not covered by any medical insurance providers. This is because the main treatment needed is "Laser Treatment" and medical insurance providers will not cover them in their available plans since "Laser Treatments" are considered "Cosmetic Surgery"; which is a "want" and not a "need".

The Struggle Is REAL!

My mother had BSS from the time that she was 18 years old. She is the only 1 out of 13 kids who developed this condition. I am the only 1 of her 3 kids who also developed this condition and now, oldest daughter is the only 1 out of my 4 biological kids who inherited this rare condition. This is just "my" family situation. For half of my life, I never knew what this skin condition was because my Mom was never able to get a proper diagnosis to let her know what it was either.

It took about 30+ years of my life to find out that this condition is called, Brooke Spiegler Syndrome and there's no cure. BSS affects the carrier physically, mentally, emotionally and financially. Although they develop as benign tumors, they still have the possibility of becoming Malignant. Yet, insurances choose to see the treatments as a "want" and not a "need", even though the treatment of tumors is a form of preventative care.

Carriers of BSS go through many stages of unknown symptoms and side effects of BSS without being able to connect such things to the condition. As a carrier, I have been dealing with issues with oral care, hair loss, both dry and oily skin on face, dry flaky scalp that's not dandruff, struggles with mental health and low self esteem or confidence when meeting new people, plus more. I am not alone. There are many of us going through this but are unsure which conditions are connected to BSS from lack of research and support. We need our own research and support team dedicated to the fight against BSS and researching to possibilities of finding a cure. We matter too.

We NEED your help and support.

The Power of Your Donation:

I am asking for your donation to help us (Carriers of BSS) to do the following things:

• Raise Awareness About Brooke Spiegler Syndrome (Ads, Booklets, Seminars, Fundraising Events, etc)
• For Research on BSS, Treatments, Possible Solutions to Cure It
• Medical Treatments - Help Pay for Laser Treatments for Carriers of BSS, Travel Expenses for Medical Appointments
• Build a Reputable Nonprofit Organization to be Finally Included on Lists and Searches for Rare Diseases/Conditions
• Mental Health - Community Support Groups for Carriers and their Families

For more information or "Quick Facts" on BSS here is a link to a video I created a few years ago.

https://drive.google.com/file/d/1bZQUJKNmrenByqqvTPuyvNwH6NldHPBe/view?usp=sharing

The video is for educational purposes only and should not be used for anything other than that.