A thin-green, extra-long oxygen tube bends and swirls across the tile floor of a kitchen in one nondescript Rio Rancho home.

On one end of the tube is a giant collection of heavy oxygen tanks lined up by the front door. On the other end gasping for her next breath is 25-year-old Anna Wenger.

Wenger has Systemic Diffuse Scleroderma, a rare disease that affects the skin, organs and immune system.

Its an auto-immune illness and theres two different kinds, Wenger said expertly. One is the diffuse and theres the limited; the diffuse is the worst kind because it hits your organs and limited just means its on the outside.

According to Wenger, this disease causes the body to produces too much collagen, which tightens the skin on the outside of many external body parts. Diffuse means the disease tightens the organs causing many internal health problems.

My lungs and all of my arteries are hardening, Wenger said. For a while, I was only experiencing the external symptoms, but when I turned 22 it started hurting me internally.

Wenger said this disease affects around 300,000 people nationwide and, of those diagnosed, many only have the external or limited symptoms.

Before Wengers diagnosis, she says she was an active child who enjoyed swimming, cheerleading, and playing soccer.

We would go to the lake every weekend and I had just started roller-blading, Wenger said. All of a sudden I lost a dramatic amount of weight, and started slowing down. I didnt notice it but those around me noticed it and thats when I went to the doctor.

Doctors diagnosed Wenger with Systemic Diffuse Scleroderma at 12 years of age, and told her mother she wouldnt live past 20. But Wenger said she didnt feel much different until a year later, when she noticed ulcers forming on her elbows.

Because of the rapid movement of the disease I lost some of my fingers and toes, Wenger said. The doctors gave me prednisone and methotrexate, which just wasnt helping.

Going to school became almost impossible at this point in her life, she said. After dropping out of school and trying to take her medication, Wenger noticed she was rapidly getting worse.

After 10 years of external symptoms only, it started hitting my organs really bad, Wenger said.

She was living on her own in Arizona dealing with her symptoms, she said, when everything changed.

I was happy I had outlived the date doctors said I would die, when I became so ill I had to move to New Mexico to receive help from my mom, Wenger said.

One day, after moving in with her mother, Wenger said she felt really cold and could not breathe very well.

We went to the hospital and they put me on oxygen, then I got really hungry and ate some (fast food) and went into heart failure, Wenger said. Then I had to be incubated and woke up five days later on life support and 33 liters of oxygen.

Every day has been different for Wenger since that fateful incident, she said. Now Wenger has to prepare a specific low sodium diet from scratch on a regular basis that does not interfere with her symptoms. Wenger also has to be hooked up to oxygen everywhere she goes to compensate for her lung functions due to the reaction of her disease.

Although many people would be devastated by this sudden lifestyle change, Wenger stays optimistic, because she says she knows of a possible cure.

With a stem cell transplant, doctors take out your stem cells, and then they harvest them to get them healthier, Wenger said. Then you go through five days of intense chemotherapy and then they put the cells back into your body to re-start your immune system.

The cost of the procedure that may cure Wenger is $150,000, plus an additional $25,000 for the evaluations from a specialist, she said.

Thats not even including lodging and food and everything else, Wenger said.

This procedure, which is still in trial, is not covered by Medicare, she said. Add in the fact that Wenger has heart issues puts her at-risk for many of the clinics providing stem cell replacement.

Stretching resources is a daily battle for Wenger, who lives on $700 a month, she said.

If I hadnt moved in with my mom, there is no way I would make it through, Wenger said.

Theresa Johnson, Wengers mother and main caregiver, said she fell to the ground after hearing her daughters initial diagnosis.

I really had a hard time getting my head around it, Johnson said. At that time, when she was 12, she was barely walking because the symptoms got so bad.

Johnson said her daughter was a natural competitor that excelled in sports and loved dancing.

When this disease hit her body, it hit her skin very rapidly and she tightened up and could not move. Johnson said. For a long time the disease stopped at her skin and did not go into her organs, so we were hopeful.

Now, with full understanding of the seriousness of her daughters disease, Johnson said she is looking for ways to help find a cure.

Sacrifice is the main thing, Johnson said. I dont want anything for myself everything is for her and my son. I will do anything to see her get better. If I have to lose my home I will lose it whatever.

Although Wenger is limited on her mobility, she said she likes to stay busy and active working on many projects.

I like a lot of different things. I like to put together furniture, I love painting and thats pretty cool that I can still do it even though half my right hand is missing, she said, laughing at that.

Wenger has also put together a Scleroderma support group that meets the second Saturday of every month at Sabana Grande Recreation Center, just down the street from her home.

I had 15 people meet up at my last support group, Wenger said. I am the main person who does this, but the people help me put up the chairs.

Family members and people dealing with Scleroderma are in attendance, she said.

I love doing this; it makes me feel good and all of the members are so sweet to me, Wenger said.

Wenger kept her diagnosis a secret for a long time because she was afraid people would treat her differently, she said.

I just wanted to be a normal teenager, Wenger said. Now that I look back, I shouldve raised awareness of my disease to help others with the same symptoms out, thats what I am doing now.

Wenger said she feels blessed to still be able to do things because she knows of so many with the disease that cant.

I can still make my own food, change my clothes, take a shower and do daily tasks, Wenger said. I still count my blessings.

Read the rest here:
Dying to live (A young woman with a rare disease pushes to find a cure) - Rio Rancho Observer