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.

This four-part video is a round table discussion between several of PHA’s emerging leaders. This was the final general session at PHA’s 2008 Conference. Hear their advice on how everyone can help raise awareness of pulmonary hypertension through media, fundraising and advocacy.

The Global Genes Fund is a platform dedicated to promoting rare disease research initiatives that are focused on developing therapies and treatments within these childrens lifetimes. This platform will be a clearinghouse for innovative, collaborative research that will impact the millions of children affected by rare diseases and disorders. Vote Today! www.refresheverything.com/fund-hope-for-sick-kids

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??????????

A conference tradition! From PHA’s 2008 Conference, watch as Myung Park, MD and Donna Pederson share their journey with pulmonary hypertension.

Featuring an appearance by Charlie Daniels, this is the one minute trailer for our documentary, “Mercy Medical Airlift: Compassion Takes Flight,” about the nation’s largest and oldest nonprofit that coordinates and provides charitable medical air transportation for needy families and wounded veterans. Watch either the full one hour, or 22 minute, version for free at www.mercymedical.org. Please consider donating all or a portion of your frequent flier miles, or making a tax-deductible cash donation. Thank you.

(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.