How One Alpha-1 Patient Found Hope

Jul 19, 2018 | Patient Blog

Nearly one of every 2,500 people have this rare genetic condition, and for many like Maurice, they’re fighting back by sharing their story to help raise awareness and to bring encouragement to others battling this same condition.

Recently, Maurice shared with us an article she had previously published in the Albany Herald located in Albany, Georgia. In the article, Maurice shares her diagnosis and journey that also tragically includes the loss of her own brother to the same illness.

In her own words, here is her Alpha-1 story:

Maurice Curry of Albany is attempting to get the word out on a rare genetic condition known as Alpha-1 Antitrypsin Deficiency, which often takes several years to diagnose. Curry was diagnosed with the disease 19 ½ years ago after it had taken doctors five years prior to identify her diagnosis. She has received weekly infusions for the past 19 years at the hospital in Albany.

After seeing doctor after doctor for five years, Maurice Curry ended up being in the same boat as roughly one of every 2,500 people in the United States by being among those suffering from a condition known as Alpha-1 Antitrypsin Deficiency.

Information from the Alpha-1 Association describes the disease as a genetic condition passed on by both parents to their children that can cause serious liver disease in children and liver and/or lung disease in adults.

Alpha-1 antitrypsin is a protein produced mostly in the liver, and its primary function is to protect the lungs from neutrophil elastase an enzyme that normally serves a useful purpose in lung tissue by digesting damaged or aging cells and bacteria to promote healing, but if left unchecked, it will also attack healthy lung tissue.

Alpha-1 antitrypsin, in sufficient amounts, will trap and destroy neutrophil elastase before it has a chance to begin damaging delicate lung tissue. Consequently, if an individual doesn’t have enough alpha-1 antitrypsin, the enzyme goes unchecked and attacks the lung, the Alpha-1 Association website explains.

Some common diagnoses associated with the disease include emphysema, chronic obstructive pulmonary disease (COPD), asthma, chronic bronchitis and bronchiectasis? and patients are usually more susceptible to lung infections.

It hit my lungs instead of my liver, Curry said. I was treated (initially) with steroids, but I couldn’t breathe. (At the time of my Alpha-1 diagnosis) there was one company making the medication, so I had to wait six months for my medication.

There are three companies making it now.

Curry, who also is an ovarian cancer survivor, was ultimately diagnosed with the condition 13 years ago. In order to keep it in check, she goes to the oncology floor at Phoebe Putney Memorial Hospital to receive weekly intravenous treatments.

Even though she lives independently, Curry has found that Alpha-1 has hampered her quality of life, forcing her to stop working at age 55. Cold air can cause spasms in her bronchial passages, which means that during the winter months she often has to stay inside or cover her nose and mouth with a scarf.

She has asked about a lung transplant, but was rejected because of heart damage. While she has been lucky so far concerning her liver function, that doesn’t necessarily mean circumstances will stay that way.

I’m very limited in what I can do, but I try to do (physical therapy), she said. I have good days and a lot of bad days.

My brother died of it (Alpha-1) because he was diagnosed too late.

While the disease is technically considered a COPD, the Alpha-1 community has been tasked with finding a way to help boost awareness of the condition outside of that community.

People need to know it is more than just a chronic lung disease, Curry said. Gov. (Nathan) Deal is wanting us to spread awareness (by sending out letters).

There are a number of events held in the Atlanta area to help educate people on Alpha-1, such as walks or conferences, but there have not been any near Albany. Curry has not been able to attend the Atlanta events in several years because of her health.

However, she is relied upon to do outreach in Albany to those diagnosed with Alpha-1. She is often connected to these individuals through a physician who contacts her on their behalf, but many don’t want their names out there.

There are no plans to have an event in Albany, but I would like to eventually see one here, she said. There are several people here who have it (Alpha-1), but they are private about it.

Awareness needs to be raised (about the condition and testing). (The test) is only just a finger prick.

The symptoms of Alpha-1 often include shortness of breath, wheezing or non-responsive asthma, coughing with or without sputum production, recurring respiratory infections, rapid deterioration of lung function and unexplained liver problems and/or elevated liver enzymes. It takes an average of three doctors and seven years from the time lung symptoms first appear before proper diagnosis is made. More than 12 million people nationwide have been diagnosed with COPD, and about 3 percent of them are predicted to have Alpha-1, information from the Alpha-1 Association shows.

Roughly 10-15 percent of all liver transplant candidates have the Alpha-1 related genetic abnormalities, and Alpha-1 is the most common genetic condition for which pediatric liver transplantation is done. An estimated 20 million people in the U.S. are undetected carriers of an abnormal copy of the gene that causes Alpha-1, and may pass the copy of the gene on to their children.

Through Patient Services Incorporated, There Is Hope

I would like to take this opportunity to thank Patient Services Incorporated, a non-profit, charitable organization that provides financial assistance for patients with chronic illnesses who are struggling to keep up with expensive premiums and co-payments. Since 1989, PSI has provided much needed patient assistance to fund thousands of patients and their families in a myriad of disease areas. Patient Services continues to provide peace of mind to patients living with specific chronic illnesses by locating health insurance in all 50 states, subsidizing the cost of health insurance premiums, providing pharmacy and treatment co-payment assistance, assisting with Medicare Part D co-insurance and helping with advocacy for Social Security Disability. Without their financial help, I would not be living today, as well as thousands of other with chronic illnesses in need of financial assistance.

The U.S. Department of Health and Human Services has recently imposed new rules on Patient Services Incorporated in restricting their ability to help/provide and in some cases limited assistance to existing patients or a reduction in the number of patients that can be assisted due to charitable donors and future potential donors, just because Patient Services Incorporated no longer can ask for important information from donors and potential donors that is critical to establishing patient assistance programs any longer. Please join all of us in repealing the U.S. Department of Health and Human new rules and join the PSI Advocacy Ambassador group at: [email protected].

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