Gratitude and Hope: A Message from a Rare Disease Warrior

Gratitude and Hope:

A Message from a Rare Disease Warrior

Dear Donor’s,

I hope this email finds you well. My name is Angel Ramos, and I am writing to express my heartfelt gratitude for your generous support of my Go Fund Me campaign. As someone living with a rare disease called Alpha one deficiency, your contribution means more to me than words can convey.

I want to thank you for the time you have taken to read this.

I am a father of 2 and grandfather of 2, I have always been a hard working man until now.

I will like to concentrate into what is the most concern to me, this is what this rare disease is all about.

Alpha 1 deficiency

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition – it is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age.

For each trait a person inherits, there are usually two genes; one gene comes from each parent. People with Alpha-1 have received two abnormal alpha-1 antitrypsin genes. One of these abnormal genes came from their mother and one from their father.

Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin, or AAT. AAT, the alpha-1 protein, is mainly produced by the liver. The main function of AAT is to protect the lungs from inflammation caused by infection and inhaled irritants such as tobacco smoke.

The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a build-up of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.

Symptoms can appear early in life, but many will not begin until a person reaches middle-age. Individuals with AAT deficiency have a wide variety of symptoms which may include:

• Shortness of breath

• Excessive cough with phlegm/sputum production

• Wheezing

• Decrease in exercise capacity and a persistent low energy state or tiredness

• Chest pain that increases when breathing in

• Lung conditions that get worse over time, like COPD

• Lasting airway damage (emphysema, bronchiectasis) When you have COPD, you often have symptoms of emphysema, a serious condition that makes it hard for you to push air out of your lungs. COPD can make you wheeze and struggle to breathe. You may cough up mucus and feel tightness in your chest. 

• High blood pressure that affects the arteries from your heart to your lungs (pulmonary hypertension)

• Liver scarring Liver issues. About 30% to 40% of people with this condition will have liver problems at some point in their lives.

• Liver cancer

• Heart, liver, or respiratory failure

• Inflammation of fat beneath the skin (panniculitis)

Breathing issues. Makes you more sensitive to smoke, dust, and allergens like pollen. If you catch a cold, your symptoms may be stronger. You also might have chronic bronchitis, an irritation of your airways that causes coughing and affects breathing.

To make it worse I have a severe case of Sleep Apnea

According to mayo clinic.

Having severe case of sleep apnea may disrupt your sleep or leave you sleepy and tired. Long-term effects of untreated sleep apnea may lead to heart disease, COPD, or diabetes.

Complications:

Sleep apnea is a serious medical condition. Complications of OSA can include:

• Daytime fatigue. The repeated awakenings associated with sleep apnea make typical, restorative sleep impossible, in turn making severe daytime drowsiness, fatigue and irritability likely.

You might have trouble concentrating and find yourself falling asleep at work, while watching TV or even when driving. People with sleep apnea have an increased risk of motor vehicle and workplace accidents.

You might also feel quick-tempered, moody or depressed. Children and adolescents with sleep apnea might perform poorly in school or have behavior problems.

• High blood pressure or heart problems. Sudden drops in blood oxygen levels that occur during OSA increase blood pressure and strain the cardiovascular system. Having OSA increases your risk of high blood pressure, also known as hypertension.

OSA might also increase your risk of recurrent heart attack, stroke and irregular heartbeats, such as atrial fibrillation. If you have heart disease, multiple episodes of low blood oxygen (hypoxia or hypoxemia) can lead to sudden death from an irregular heartbeat.

• Type 2 diabetes. Having sleep apnea increases your risk of developing insulin resistance and type 2 diabetes.

• Metabolic syndrome. This disorder, which includes high blood pressure, abnormal cholesterol levels, high blood sugar and an increased waist circumference, is linked to a higher risk of heart disease.

• Complications with medicines and surgery. Obstructive sleep apnea is also a concern with certain medicines and general anesthesia. People with sleep apnea might be more likely to have complications after major surgery because they're prone to breathing problems, especially when sedated and lying on their backs.

Before you have surgery, tell your doctor about your sleep apnea and how it's being treated.

• Liver problems. People with sleep apnea are more likely to have irregular results on liver function tests, and their livers are more likely to show signs of scarring, known as nonalcoholic fatty liver disease.

• Sleep-deprived partners. Loud snoring can keep anyone who sleeps nearby from getting good rest. It's common for a partner to have to go to another room, or even to another floor of the house, to be able to sleep.

Complications of CSA can include:

• Fatigue. The repeated awakening associated with sleep apnea makes typical, restorative sleep impossible. People with central sleep apnea often have severe fatigue, daytime drowsiness and irritability.

You might have difficulty concentrating and find yourself falling asleep at work, while watching television or even while driving.

• Cardiovascular problems. Sudden drops in blood oxygen levels that occur during central sleep apnea can adversely affect heart health including heart growth.

If there's underlying heart disease, these repeated multiple episodes of low blood oxygen — known as hypoxia or hypoxemia — worsen prognosis and increase the risk of irregular heart rhythms.

• Yes, it is possible to die from sleep apnea. Obstructive sleep apnea increases the risk of sudden cardiac death, severe apnea may have very low oxygen levels.The American Sleep Apnea Association estimates that 38,000 people in the United States die each year from heart disease with sleep apnea as a complicating factor.3 Although uncommon, it is possible to die during sleep from untreated obstructive sleep apnea.0 However, it is more common to die from complications related to sleep apnea, like sudden cardiac arrests, depression, memory loss, acid reflex, mental confusion, adult asthma, weakened immune system, breathing troubles, high blood pressure, breathing troubles, heart problems, liver problems, low blood oxygen levels, abnormal cholesterol, fatigue, high blood sugar levels, Brain gray matter area including Nervous system damage, especially in your brainstem (which is what manages your breathing) and parts of your spinal cord.

Asthma, panic attacks, migraine that last for day's, that with severe lower back pain that can hardly let me sleep and move around makes it all worse.

Living with this rare disease presents unique challenges—physical, emotional, and financial. Each day, I navigate uncertainties, but your kindness can provided a beacon of hope.

Your donation not only eases the burden of medical expenses but also reminds me that I am not alone in this journey.

Through your generosity, you’ve become a vital part of my support network.

Your belief in my resilience fuels my determination to keep fighting. Whether it’s funding treatments, accessing specialized care, or raising awareness, your impact extends far beyond the monetary value.

I promise to use these funds wisely, investing in my health and advocating for others facing similar challenges. Your compassion inspires me to pay it forward—to be a source of hope for someone else.

Once again, thank you from the depths of my heart. Your kindness can make a difference in my life profoundly, and I am forever grateful.

Wishing you health, happiness, and continued blessings,

Angel Ramos.

https://www.gofundme.com/f/support-angel-ramos-in-his-health-battle-for-survival?utm_source=copy_link&utm_medium=customer&utm_campaign=man_ss_icons&attribution_id=sl:cabe8214-7a67-43c6-bac0-0c3ad3be9b83

If you cannot donate please consider spreading the word so that I can reach more people for help.

Thank you have a bless and great day.