Help Ashley with Alopecia and Hemochromatosis

A letter from Cindy, Ashley's mom:

As a young child, Ashley was diagnosed with Alopecia Areata; which is an autoimmune disease that attacks the hair follicles. We had noticed Ashley’s hair was falling out in patches, but did not know why. When she was diagnosed, we found out that this is caused due to an autoimmune disorder.

As we all know this past year has been extremely stressful due to Covid-19, and because Ashley suffers from an autoimmune disorder; the added stress of having to deal with the virus; caused her autoimmune disorder to kick in full-effect! Ashley’s hair started falling out in its entirety. This is known as Alopecia Totalis.

This past year Ashley went to the dermatologist to receive cortisone shots in her scalp to help promote follicle growth, but the dermatologist thought it necessary to do a blood draw to see if there were any underlying issues. The results were not good. It was discovered that Ashley also suffers from Hemochromatosis. This is a hereditary condition in which the body stores more iron than it needs. The extra iron is deposited in the liver, heart, and pancreas at toxic levels; which can prove fatal to Ashley. Therefore, she requires yearly ultrasounds of her organs.

This past year Ashley has had to undergo many treatments for both her Alopecia and her Hemochromatosis. The treatments can be painful and exhausting for her. To treat both conditions requires many visits to her doctor, dermatologist, and phlebotomist.

o Alopecia (no cure)

 Cortisone shots

 Topical steroids, shampoos

 More aggressive treatments: high doses of prednisone

 Trials for alopecia treatment, but turned down d/t hemochromatosis

o Hemochromatosis (no cure)

 Blood draws (weekly)

 Phlebotomies (dependent on blood draw results; at least once a month)

 Ultrasounds to check on other organs

 Stringent dietary habits for life.

Ashley does not have medical coverage through her job, so she has to pay for premiums and all co-pays, out-of-pocket. The out-of-pocket cost has been very costly for her and has created a financial hardship. She did apply for financial assistance through a program at the hospital, but they determined that she did not qualify, based on their requirements. Ashley was able to purchase her first “real hair” wig, but that was a cost of $500.00. Her alopecia cortisone shots cost $75.00 per visit; the Hemochromatosis blood draws cost $40.00 weekly; the phlebotomies cost $75.00 weekly, and the ultrasounds of her organs cost $150 a year.

Any donation will totally lighten the financial burden for Ashley.

The financial assistance can help Ashley purchase new wigs; which will definitely help with boosting her self-confidence, and would absolutely be a silver lining for her. The financial assistance will also help curb the stress that she struggles with every time she has another costly medical appointment. The donation will help decrease the stress that she has endured; not only due to the financial strain, but also, due to losing all of her hair, and finding out that she has a potentially life-threatening condition.

We are not in the habit of asking anyone for financial assistance or any other type of assistance, but when Ashley started losing all of her hair, and then was given the diagnosis of Hemochromatosis; has left us without any other options, but to seek assistance from friends and family.

The Hemochromatosis diagnosis was not made sooner because her doctor (at the time) overlooked her iron levels from blood draws that were done during physicals that were required for softball. In 2012 medical records show her iron levels were elevated, but the Hemochromatosis wasn’t diagnosed until the dermatologist recommended a blood draw due to Ashley being at high risk for other autoimmune disorders.

The Alopecia diagnosis was made when Ashley was around 10 years old when we started noticing small bald patches on her scalp. This is when she started to undergo cortisone shots to help stimulate the follicles. The cortisone shots worked for years, but as I stated before, the last year or so has been difficult, challenging, and stressful; which has directly affected her alopecia, and triggered her auto-immune disease into full effect, causing all of her hair to fall out in record time.

This request for help does not come easy, but as a mother, I would go to the ends of the earth for my child. Watching my daughter struggle with her health; the loss of her beautiful hair; her confidence; finances and the constant worry about the future; is more than anything a parent can endure. So anything you can spare will be greatly appreciated, and for that, we are very, very thankful.

*The goal of $3000 is to help alleviate some of the regular incurred medical expenses.