I applied for SSI and SSDI in March of 2009 due to a 1 in 1 Million rare disease I have, that has no known cause.It’s called Idiopathic Pulmonary Arterial Hypertension (IPAH) It causes the right side of my heart to increase in size, due to the narrowing of my pulmonary arteries; therefore the blood carrying oxygen backs up into the right side of my heart. It also obviously causes a lack of adequate oxygen which often causes me to faint. In April of 2009 I was told that due to the R side of my heart being significantly enlarged, that I would live for less than 10 years, and may need a lung transplant. SO…since I applied for these benefits in March of 09 and was approved for both SSI and SSDI in March of this year, I was wondering if I am supposed to be reimbursed for any out of pocket medical expenses for the time in between the application and the actual approval. I am owed and have allready received my 1st check for back pay for the amount in which I would have gotten monthly if I was granted assistance from the day I first applied, but it’s other things like medical bills, prescriptions, co-pays, ETC that I am curious about as far as reimbursement. I DID have insurance during that time, which didn’t really help much, other than getting me in to certain physicians and specialists, to get necessary testing, and random procedures performed. But the insurance was paid my my mother in law, as I could not afford it, and had been turned down by sooo many insurance companies since I actually had health problems. This insurance cost was $435.00 per month!!!! Sorry for ranting and going into too much unnecessary detail, but if anyone can help answer any of my questions, or just wants to write me, I’d appreciate it VERY VERY much.
Thanks,
Mallory Goggans

Most of the readers would know what skin allergies are. Reactions like skin redness, swellings, red patches, itching, and others are symptomatic of all common skin allergies.

The article below discusses some rare skin allergies and their symptoms:

1. Acute Uticaria or Hives- It is a skin rash caused by reaction to allergens, thus producing histamine and develops into body rash. It is also known as nettle rash, welts, and wheals. Water retention on skin, fluctuating temperature, excessive sunlight, insect bites and certain foods causes Uticaria. Some symptoms of Uticaria are lesions, skin eruptions, skin irritation, reddish swellings, headache, and problem in respiration, oedema, flushing, dizziness, and others. Around 15% of children suffer from Acute Uticaria.

2. Atopic Dermatitis- Usually a genetic condition, it is a skin inflammatory disorder. It is mostly seen in children and as the statistics show, around 20 percent children affected with this skin allergy. Exposure to food allergens, dust allergens, and genetically engineered skin disorders are the major causes of Atopic Dermatitis. Some of the symptoms are formation of lesions on neck, ears; scratching, itching, intense pruritus. The skin allergy exposes the patients to viral, bacterial, and fungal infections and other skin complications.

3. Argyria- A rare disorder in which the victim’s skin turns bluish or grey colored. The infection is caused due to over-exposure to silver and its compounds. Such exposure can occur through silver products found in home, use of silver salt, and use of silver dental fillings. Apart from the skin turning bluish-grey, people develop gum stains on nose, hands, and forehead when exposed to sunlight.

4. Harlequin Itchthyosis- It is an incurable genetic condition caused by the gene ABCA12. It is a birth defect and the mortality rate is very low. The child is born with scaly skin type armor which grows twice as faster than human skin. Bleeding after birth, facial deformities, inability to bend limbs, almost absent ears, excessive number of toes is some symptoms of this skin allergy.

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A number of pests and diseases are going to occur in your garden but there are ways to keep these to a minimum.

Choose good quality plants avoiding soft bulbs, lanky bedding plants and unhealthy or disease-ridden shrubs and perennials. Cut out dead wood and remove overcrowded branches to ensure adequate ventilation. Paint any large cuts with Arbrex to avoid infection. Make sure the plant is suited to the site you have planned. Rotting plants can be a source of infection and a breeding ground for slugs and woodlice; remove dead plants, rubbish and weeds. Spray fungicides as soon as spots are seen. When planting ensure there are no air pockets around the roots. Feed all plants properly. Prepare the ground prior to planting to avoid waterlogging.

These are general, every day rules. Below we examine the most common pests and diseases.

Aphids (Greenfly, Blackfly)

Attack young shoots and can spread viruses. Natural predators like ladybirds and lacewings can control Aphids so encourage them into your garden. Chemicals that can be used are Pirimicarb and Dimethoate and fatty acids.

Whitefly

Greenhouse Whitefly attack glasshouse plants like tomatoes. Cabbage Whitefly lives outside and survives on brassicas. Spray repeatedly with an insecticide containing Dimethoate or Malathion.

Caterpillars

Attack fruit, vegetables and ornamental plants. They Survive over the winter by pupating. Use Derris or Malathion to control or pick off the larvae.

Earwigs

Damage flowers (particularly Dahlias). Use traps such as flowerpots filled with straw or spray with Permethrin or Pirimiphos Methyl.

Slugs and Snails

Feed on soft young growth and are most active at night. Use slug pellets containing Methiocarb or Metaldehyde.

Eelworms

Suck out cell content from plants which discolour, distort and eventually die. Burn infected plants. Soak bulbs in hot water prior to planting and rotate crops to avoid attacks.

Red Spider Mite

Attack fruit, vegetables and ornamental plants. Yellowish mottling on upper surface of leaves with colonies living underneath the leaves covered in fine webbing. They are difficult to control but try spraying with an insecticide containing Dimethoate or Malathion. Biological control can also be used.

Bulb Scale Mites

Attach the neck of Narcissus bulbs and amaryllis. Immerse dormant bulbs in hot water for 3-4 hours to control.

Carrot Fly

A pest of carrots and parsnips. Larvae eat the roots and cause them to rot. Leaves have reddish tinge. Use a soil insecticide like pirimithos-methyl. Sew in June to avoid first generation larvae. Cover the necks of the carrots with good layer or soil.

Vine Weevil

Larvae feed on the roots of plants and you don’t always know it’s there until the plant dies. Use a Biological control or soil insecticide containing perimiphos-methyl.

Narcissus Fly

Flies lay eggs near the neck of bulbs, the larvae hatch out and burrow into the bulb, feeding on the inner tissue. Dig up and destroy the bulbs

Powdery Mildew

Fungi lives on surface of leaves and cause a white coating. Leaves turn yellow and drop early. Use a systemic fungicide and improve moisture retention. Remove infected parts of the plant and destroy.

Downy Mildew

Fungi lives within the tissue of the plant causing discolouration. Leaves will distort and wilt.

Improve air circulation and treat with Mancozeb.

Rust

Fungi attacks plants producing orange/brownish coloured areas on the leaves which may wither and fall early. Remove affected leaves and improve air circulation.

Wilt

Fungi enters via damaged roots causing wilting and withering foliage. Remove affected plants.

Black Spot

Fungal disease causing defoliation. Avoid excessive nitrogen, space well or spray with fungicide.

Narcissus Smoulder

Leaves wilt and collapse as they emerge. Destroy plants at first sign of infection.

Tulip Fire

Stunted, withered plants with grey, furry mould. Destroy plants at first sign of infection.

Honey Fungus

A very serious disease of woody plants and trees. Foliage turns yellowish/brown and white fungi grows underneath the bark at the base of the plant. Remove and burn the plant. Do not plant other woody plants in the same area.

In recent years may have benefited from treatment with factor VIII for haemophilia you suffer, given as an injection every two days or three times a week. This method of administration is known as prophylaxis and may help prevent bleeding before their onset.

Therapy with factor VIII is a good way to treat bleeding. However, once the bleeding occurs in a joint, others may occur during recovery. Joint can become a “target” and can occur repeated bleeding, leading to long term deterioration.

Therefore, experts recommend to people with haemophilia celiac disease to receive prophylactic treatment for preventing bleeding. According to experts, prophylaxis stops bleeding and allows you to practice sports.

Forms of prophylaxis. Prophylactic treatment of hemophilia A is classified during and after time after administration. Depending on duration, short and long prophylaxis exist, and depending on time of administration, primary and secondary.

Establishment of primary prevention is 1 to 2 years, before the first incident of child bleeding. Treatment is followed up to adolescence, maybe even more. Primary prevention is effective to protect the joints of children from a severe form of disease.

Secondary prophylaxis is indicated after recurrent bleeding episodes. Secondary prophylaxis can be recommended for children who have not completed primary prevention in childhood.

Even if the disease is not disturbing you, is a must to continue the treatment. As you age may appear less bleeding and you might be tempted to discontinue. Studies in patients with haemophilia A have indicated that may occur small bleeding in joints that go unnoticed and, therefore, not treated. Long term, these small repeated bleeding may lead to joint damage. A clinical study in infants showed that regular treatment is very effective in preventing bleeding and can help protect joints from deterioration caused by bleeding that go unnoticed.

Haemophilia is rare and, like other rare diseases that are also called orphan diseases, treatment is very demanding and very expensive. Prophylactic treatment reduces long-term secondary costs incurred by health insurance schemes, cost of treatment of viral infections (HIV / AIDS, chronic hepatitis C, chronic hepatitis B) and orthopedic complications costs (joint prostheses).

Compliance with treatment program is essential! When you follow a prophylactic treatment with factor VIII is important to continue to treat you like your doctor recommended (eg daily or three times a week). Only if you’ll follow that treatment program you can get maximum benefits offered.

In cases of severe haemophilia, the biggest benefit of prophylaxis is to decrease the probability of damaging your joints long term. It is also less likely to bleed and, consequently, less likely to get to hospital with serious bleeding.

A couple of weeks went by, and it was discovered he had a rare disease in his limbs. The Germans told him “we are sorry, but we have to amputate your right arm”
The soldier replied “if you must, but will you send it back to the states so it will be buried in my homeland?”
They said “Yes”.
A couple of weeks later it spread to his left arm, and it needed to be amputated as well. He made the same request to send the limb home, and the Germans obliged.
A couple more weeks later, it was discovered it spread to his left leg. The Germans informed him they would need to now amputate his leg. He again requested they send the limb to the states. This time the Germans said “NO!”
He asked “why not?!”
They replied “We think you are trying to escape!!”
To “ilovethecolony’s”- Do you think this is funny??????????

(En español) Moira was a participant in the 5th European Conference on Rare Diseases (ECRD) Krakow, Poland 2010. Moira is a member of Fundacion FOP in Argentina.

TriVita is a company based in Scottsdale Arizona, and has been offering health and wellness products for over 10 years.

They are debt free and growing like crazy at this time.

Nopalea is a liquid drink that primarily offers an anti inflammatory health benefit.

Chronic pain can be a sign of inflammation, which this product seems to improve for many that try it.

In addition to chronic pain, there are many other serious conditions that may begin with inflammation that include: diabetes, asthma, allergies, arthritis, Alzheimer’s, autoimmune, respiratory and many more.

Even rare skin diseases seem to be helped by this all natural inflammatory.

The Nopalea drink is sourced from the fruit of the Nopal cactus.

The healing properties of this Nopal cactus have been relied upon by the natives of the Sonoran Dessert area for centuries.

The Nopal fruit delivers potent Betalain antioxidants, which detoxify the body, ridding it of harmful toxins that cause inflammation at the cellular level in our systems.

This overall affects your bodies cells, reducing inflammation and bringing optimal cellular health.

There are 24 Betalains and only the Nopal cactus of the Sonoran dessert contains all 24 Betalains. This is because the Sonoran Dessert is the most extreme desert in the world and the Nopal plant needs all 24 betalains to survive in this intense environment.

Basically if our cells are healthy, then we will feel healthy.

Reducing inflammation in the body can help improve joint pain, reduce heart and/or stroke potential, improve brain function, improve mouth and gum problems, and even can improve your emotional well being.

Eliminating pain for sure can make anyone feel better and more energetic.

Since our bodies natural defense to a health is inflammation, it is no wonder that Nopalea, with its all natural anti inflammatory attributes offers a health and wellness improvement to almost everyone that tries it.

There were and still are christian and muslim groups who oppose vaccinations of deadly viruses because it interferes with god’s creation, like the polio and recent cervical cancer vaccines.

On the other hand, why do some theists think it’s ok to eliminate the viruses god created?
Interior Castle- Your god’s not a full creator then, meaning he’s not omnipotent.
There really are religious people who oppose vaccinations. It’s these people who are putting the world at risk~ polio was eradicated from Burma but got re-introduced through India because some religious groups there opposed it.
Kashif- “Maulana Fazlullah, a conservative religious leader in the Swat district of NWFP, warned his local community in one of his Friday sermons to stay away from foreign-funded polio vaccination. “I must tell my brothers and sisters that finding a cure for an epidemic before its outbreak is not allowed in Sharia [Islamic law],” Fazlullah was quoted as saying in the local media.

“According to Sharia, one should avoid going to areas where an epidemic has broken out, but those who do go to such areas and get killed during an outbreak are martyrs,” he said.”

[there's a push by mainstream religious groups to get these religious leaders to change their views but it's not easy]

For those of you old enough to remember Flip Wilson, you will remember a character of his, Geraldine. Geraldine is described as “a wise-cracking smart-ass with an unseen boyfriend named Killer.” One of Geraldine’s favorite sayings was, “Beauty is in the eye of the beholder, and you just ain’t beholdin’ hard enough.” I miss Geraldine. There is wisdom in this line of Geraldine’s, especially for now when we are so obsessed with physical beauty.

Our generation is probably spending more money on weight loss, plastic surgery, botox, liposuction and spas than ever before. Anorexia and bulimia are not rare diseases anymore and are being seen in children as young as 10 years old. Women (and men) will take weight loss pills at the risk of debilitating side effects and/or death. Billions of dollars are spent annually on skin care, makeup, self-care products, and perfume. We parade our baby girls around on stage, dressed like hookers and plastered with makeup that someone thinks makes them look beautiful. We teach them to strut, pout, pucker, and grin all in the hopes that they will win a beauty contest in exchange for their innocence and their childhood.

(This was brought home in the recent movie, Little Miss Sunshine).But is real beauty entirely physical?Quite some years ago I knew a woman whose physical features did not put her on the top of the “I am the most beautiful list.” Her weight and body size were fine but her face needed some help – I thought. This was my first impression. She was a leader of sorts, often in front of the group and I felt sorry for her. (I’ve learned since then to drop the judgment. I wish I had known to do that sooner). Then I began to get to know her. She was one of the kindest, sweetest, most genuine human beings I have ever met (and that stands true these 20 some years later). She was the first on the scene if someone was in trouble, or there was a death in the family.

And she wasn’t just there, she was helping in a skilled and compassionate way. She was always ready to praise, encourage, and show understanding. She was a good public speaker and had a beautiful singing voice as well. She almost always had a smile and had an aura of joy that seemed to make her glow from the inside out. She had everything but a beautiful face. It’s strange, though, how that changed. As I got to know her better and better I noticed less and less about her physical appearance and in retrospect she is one of the most beautiful people I have ever known. Her inner beauty shines out – the real beauty of who she is and how she conducts her life makes her more beautiful than perfect facial features ever could.

The Lindsey Lohans and Paris Hiltons of the world should take lessons from her. They have every advantage in terms of physical beauty and financial ability to have everything they need to take care of themselves. Neither can begin to match the beauty that shines out from women like my friend.It is true. Beauty is in the eyes of the beholder. I just wasn’t beholdin’ hard enough.